We don't often hear stories of infants being diagnosed with type 1 diabetes -- as opposed to kids, teens and adults. That's why I was so interested in a new book focused on this topic, called Sweet Dreams: A Momma's Story of Infant Type 1 Diabetes and Beyond, the debut book of Arkansas D-Mom Patty Doss, who's also recently been sharing her D-story online.
Not only was her son David diagnosed at nine months old in 1995, but Patty's husband Jim was also diagnosed with type 1 at age 12, back in 1959. And Jim's brother Tommy had also been diagnosed with type 1 at an even younger age (18 months to be exact). So combined with Patty's father and grandmother who had type 2 and went through life-altering complications in their own time, the family definitely has some D-cred under their belts.
In this book, Patty recounts the personal side of life with diabetes in a way that captivates, but be warned: she has some strong biases about what's happening in the D-world that you may or may not agree with.
First off, the personal story is heart-breaking, as most diagnosis tales are, but this one even more so to me just because little David was so young. At nine months, he was so sick that Patty and Jim would stay up all night keeping watch, giving him regular soda because he couldn't keep any of his formula down and wouldn't stop crying.
They thought it might be a stomach virus, but lo-and-behold: not so. My heart cringed when reading how a metaphoric light bulb went on over Jim's head as he recognized his son's symptoms from what his brother had once gone through, and he rushed to get his test tape (really, even in 1995?!) to test their baby's urine for sugar. Sure enough, it came back an alarming high-sugar shade of yellow. It was early morning, and after waiting what seemed like forever to see the local pediatrician and informing him about David's high blood sugar and probable diabetes diagnosis, this is the response the parents received: "Statistically speaking, we've never diagnosed a diabetic child to a diabetic parent."
What the... what?! That was all the doctor had to say to these terrified parents? They were, after all, intimately familiar with the symptoms of diabetes.
Amazing response, especially given that this was only about 20 years ago -- not the 70s or 80s, when you might have expected that kind of brush-off. Of course, it was just the very dawn of the Internet Age, so people weren't saturated with information online like we are now.
Luckily, the young pediatrician eventually listened and did a urine test, and after a helicopter medi-vac ride for the mom and infant to a children's hospital in Tulsa, OK, the official diagnosis came and the rest is history.
Yet despite having "infant diabetes" in its title, the book mainly has a broader focus that echoes what many of us have lived through and heard, about kids living with type 1 and growing up with the condition. A number of chapters hit on the family's experiences with low blood sugars and seizures, diabetes at school in the late 90s and 2000s, adjustments of insulin rates and ratios for growing kids, and the whole teens with diabetes phenom.
Like many newly diagnosed families did then and still do now, the Doss family turned to local support groups where they could share their stories with others and not "feel alone."
I got a little teary-eyed when reading about Patty's husband Jim, who's now more than a half-century into his life with type 1 and is experiencing complications like retinopathy and neuropathy. That's always tough to hear, and it really hit a nerve to read that Jim and his son David have seen the same family doctor for years so that, in part, they each could stay close to what was going on with the other.
Interesting concept, and one that I haven't heard about before. I'd like to find out more about how often that happens with other parent-child diabetic pairs. (Remember, my mom is a longtime type 1.)
These days, Jim is retired and David has just graduated from high school and is going through that teen rebellion that many of us have -- I certainly did. As Patty writes it, neither her nor Jim thought David would ever experience this kind of unrest, which I find somewhat interesting since it's such a common theme for teens with diabetes. But hey, parents can hope, right?
And reading how David's dream for most of his life has been to serve in the military and that's just not possible because of type 1... of course that breaks my heart too.
I feel like I can relate a lot to the Doss Family's story, being the son of a type 1 mom myself and also being at that point where my wife and I want to start a family -- of course, the topic of diabetes is always on the mind, as it's almost unavoidable to have thoughts about passing diabetes along to the next generation. That's a personal journey and quest everyone has to make for themselves, so I won't go into that here.
My point is that I can see a lot of myself in how Patty writes about her husband Jim, and that also mirrors some of the stories my mom has told me about how she was raised and then subsequently decided to raise me when it came to my diabetes.
So in other words, a lot of this hits home.
To me, that personal story is what makes the book one that I'd recommend reading -- but there is another side to this book.
The Darker Side
As much as I love hearing stories about anyone with diabetes or those who are in those all-important roles as Type Awesome caretakers, it's tough to balance that with the rest of what I read in this book, pertaining to particular viewpoints on Cure vs. Technology, our health care and government system, and just the way diabetes care has evolved over the past half-a-century. Patty's opinions on these points are pretty much weaved into every part of the book from the preface to the personal anecdotes to whole chapters.
I got the sense that there wasn't really a full appreciation for what diabetes researchers do and how complicated this whole "diabetes cure" concept is. Sure, many of us are deeply disappointed in the slow pace of progress. But in recognizing the complexities, we also have to give credit where credit is due -- things have changed and they are changing, and "fixing diabetes" is clearly not as simple as scientists once thought.
Some specific points from Patty's book that stand out to me:
- Urine Test Tape: There are several mentions of the fact that patients can't get this stuff anymore, and how Patty doesn't understand why that is when it was so effective and easy to use (huh?). Really, I had to scratch my head on that one. "Back in the day" before home glucose monitoring came onto the scene, that testing tape was the only option. But it wasn't anywhere near as good as what we have now. As inaccurate as glucose monitors can be, the test tape just gave you a general sense of where you were. Honestly, I'm a little perplexed how this isn't 100% known.
- Technology: A big takeaway from this book is that our diabetes gadgets and tools are simply ways to funnel money into pockets of Big Pharma and device makers. Because really, if it wasn't about greed, then we would've already cured diabetes and wouldn't need all the "bells and whistles" on glucose monitors, insulin pumps, CGMs and so forth. And things like smart insulin and islet cell encapsulation would've already happened... NOT.
- A main theme in this book is that there's a big conspiracy preventing a cure, and researchers, industry leaders, regulators and politicians are all doing what they can to feed the pockets of those making a dime off diabetes devices and treatments.
Sure, many in our D-Community debate over whether we should be focused solely on cure research, new tech and tools, or a little bit of both since they go hand-in-hand. But I feel as though Sweet Dreams really overlooks the important work that so many researchers and companies have been doing to assure that our daily lives improve now, on the road to a cure.
In the introduction itself, these few sentences set the tone for the book and really raised my eyebrows about everything else I would read:
Since our son's diagnosis, there are more options for insulin, the blood drop is smaller for the sugar check, the needles and syringes have changed to a Flexpen and the pumps have changed people's lives -- really? Eighteen years later and that's all you can give David? My husband was diagnosed with juvenile diabetes in 1959 and that's it... upgraded diabetic supplies at a higher cost? Fifty-three years later? Please don't get me wrong: convenience rocks, but what happened to the cure?
From there, Patty recounts a conversation her husband had with a diabetes researcher on a plane ride back in the late 90s, when he was told a cure would be right around the corner within a decade. Of course, that hasn't happened, but that airplane conversation apparently is what now the foundation of how Patty feels about anything and everything related to diabetes research. I'm truly very sorry to hear that, because really a lot has changed in the past 15 years.
So there you have it: along with some great, relatable experiences, there are some strong opinions in this book, and you have to be willing to take them all together.
Also note that Sweet Dreams is heavily marketed as a Christian book, since faith is such a big part of Patty's life -- professionally, she works at the non-profit Faith's Touch Music Ministry. So her religious views are a big part of the book too, and you will find Scripture and passages pretty much weaved into every chapter, in at least one place if not more. There's nothing wrong with that, but it may be a factor in how appealing this book is to some folks versus others.
Interested in reading Patty's book? Released on April 17, 2014, it's available on Amazon for $29.43 in hardcover, $15.90 in paperback, and $3.99 as a Kindle e-book. You can also find it at Barnes & Noble and Christian bookstores. And of course, we're giving you the chance to win a copy right here...
Interested in winning a signed copy of Patty Doss's new book, "Sweet Dreams: A D-Momma's Story of Infant Diabetes Type 1 and Beyond"? Here's your chance!
We're giving away TWO COPIES to lucky winners -- one in paper form, and one in Kindle format (the winner will receive an e-book gift card with promo code).
Entering this giveaway is as easy as leaving a comment:
1. Post your comment below and include the codeword "DMBooks" somewhere in the the text to let us know that you'd like to be entered in the giveaway.
2. You have until Friday, Aug. 1, 2014, at 5 p.m. PST to enter. A valid email address is required to win.
3. If you do not want an e-book format, please say so in your comment.
4. The winners will be chosen using Random.org.
Good luck to all!