A couple weeks ago, I played in the Ray Allen Golf Tournament at the TPC River Highlands course in Cromwell, CT. It was a wonderful tourney done for great causes, one of which we all relate to. Ray, a no-doubt Hall of Fame ballplayer currently with the Boston Celtics, put it on to benefit his Ray of Hope Foundation and his family's campaign against type 1 diabetes. As I posted back on the 13th, Ray and Shannon Allen's son Walker was diagnosed with type 1 diabetes a couple years ago, at age 18 months. Since then, they have been tireless participants in the fight against type 1. Aside from hoping not to embarrass myself and my golfmates on the course, I had several objectives that day:

  1. Foremost, to support Ray, Shannon and their family in their fight against an enemy that's out to get our kids. Before the tournament I presumed the Allens had a lot of support, given Ray's station in society as an NBA star, and based on what I had seen in the media about their family's involvement in diabetes-related causes. That didn't matter to me, because in this fight against type 1 diabetes, a family can't ever have too much support, and sometimes, it comes from unexpected people at just the right moment.
  2. To deliver an autographed photo and a message. That's right. Not to get an autograph, but to deliver one. Prior to my trip to Connecticut, I was in our bedroom ironing a shirt (yes, I really was) when our nine-year old daughter JoJo entered with a photo of her in resplendent gymnastic pose, her autograph on the back. "Here, this is for Walker", she said. "Will you see him?" "Can you give this to him?" I told her I would. Then I asked her, "If you had one thing to say to Ray Allen, what would it be?" A moment passed, wherein I expected her to say something along the lines of "Go get 'em", "Beat those silly Lakers" or "What's it like to..." I should've known better. She said, "I'd tell Ray that I've had type 1 diabetes for five years and I know how Walker feels. Let's go cure diabetes!" Her exact words.
  3. To let folks know that SlamDiabetes, a campaign started by me and Natalie, was "outta the gate", gone public that day with logo-adorned golf shirts and imprinted golf towels. I wanted to get feedback, on design and mission.
  4. To have fun: to meet new people, make new friends and spend some quality time with my cousin (who's like a brother) and college buddies.

I accomplished my objectives (including my golf play) and after a night in the Bronx chowing at the Arthur Ave. Cafe and rooting on the Yankees with the Bleacher Creatures in Section 203, I returned to Vermont via a five hour drive...plenty of time to think about the tournament, the Allens, my family, diabetes, new faces and friends, how-to's, what-ifs and what-next's. Ray's golf tournament offered a bunch of takeaways for me which I think are especially applicable for those of us dealing with type 1 diabetes. As former Colts linebacker and pastor Derwin Gray says, "Let's marinate" on some of 'em:

Family and Friends Matter

I know, it sounds dopey and trite, but in the type 1 world they can mean the difference between health and illness, or even life and death. Type 1 diabetes is an isolating, intimidating disease that doesn't allow for days off. For parents with stout support, it's still stressful, disruptive, exhausting and everpresent, but there are at least moments of respite. Without it, the 24/7 nature of diabetes can become oppressive, over-exhausting and frustrating, even depressing (for kids, too). On the other hand, our kids need to see and feel that they are wrapped in the security and educated support of those around them: moms and dads, grandmas and grandpas, aunts and uncles, cousins and friends, teachers and coaches, parents' friends, grandparents' friends, and so on and so on. And it all starts with our families and closest friends.

Ray and Shannon's family weren't just everpresent and everywhere helping out with the day's chores, they were engaging and opportunistic. It seemed like there were a half-dozen of Flo and Jackie (Ray and Shannon's moms), showing up all over the course and clubhouse, ready to talk about or do anything that would bring safety and healing to their grandson, and relief to their son and daughter. If you had something about diabetes on your shirt, it was only a matter of minutes before Flo, Jackie or someone came up to you wanting to learn about what you were up to, and how it could help their Walker. Heck, I'm sure if I was promoting the local pet store, they'd have tried figuring out a way to get a cut on pet sales for the JDRF. I don't know how their omnipresence that day translates to the practical daily requirements of the Allen household; didn't ask, but I have a hunch. Their missional energy was invigorating, contagious and comforting, even for a stranger visiting from northwestern Vermont.

So, what about it? Well, if you have supportive family members and friends, appreciate them and nurture their willingness to be members of your team, your child's team. Help them to expand your support network or to enlighten others about the basics of type 1 diabetes. If you don't have much support, consider ways and seek opportunities to involve those around you in the little things diabetes-related; to break down diabetes so that it's not so intimidating and fearful. And don't give up, because more often than not, they want to help, but they're afraid(sounds like the makings of another blog).

Sweat The Small Stuff

Ray mentioned to me how he and Shannon had poured over checklists and to-do lists for the tournament, crossing off, adding on, checking this, doing that. "Every little thing", he said. To someone outside Ray's organization, everything about the tournament functioned as though it was the tenth time they'd done this, not the first. Have a child or two with type 1 diabetes? Do you have your checklists, logs and menus? Temporary basal rates or I/C ratios for sports practices or test days? Food combinations for school lunches? Plans for school bus lows or school building lockdowns? 504 and health managment plans? Midnight checks? Night-time carb coverage for high-exercise days? As you all know, these things I've listed are but a tiny, random sample of the huge inventory of data we apply every hour of every day to keep our kids stable (you know what I mean) and alive. Which of these (or those I haven't mentioned) would you slide on? Right. Not one, because each counts...a lot.

If we know we've got to "do it all" (especially if we want to instill in our children the notion of owning and controlling diabetes), why not use whatever works to help us organize and manage all of these activities. I'm a checklist and to-do list type, and we use a daily log sent back and forth between home and school nurse to keep account of things during the school week. We don't use the computer-aided log capacities of our kids' pumps as we should; perhaps we've gotten too comfortable with excellent medical reports. But that'll change starting right here, right now.  And believe it or not, I learned that at a golf tournament.


Dads Don't Talk About Diabetes...And We Must

I've been meaning to write about this phenomenon for some time. Ray Allen spoke at dinner about his organization, his volunteers and sponsors, then reminded everyone of his son's diagnosis two years ago. He had to pause for a moment, thinking aloud that it might be better for Shannon to continue for him. But he continued, and finished in good shape. As we chatted afterward, I wanted to ask him how he was doing. I wanted to tell him I understood what he experienced when Walker suffered a severe low last June. But I couldn't. I wasn't afraid of what he'd think or how he'd react. I was afraid of how I'd react to my own words, as they'd conjure up the memory of JoJo's low last April (glucagon, ambulance...yeah, it was bad).   

                                           

On the other hand, I'm sure Natalie or Shannon would've seized the moment to connect, comfort and bolster one another. Is it a gender thing? I think the gender "thing" is overblown. That's what our kids would tell us. "Who cares? Do what you gotta do to strengthen one another and help us (with type 1)!" I could hear those words coming from JoJo's mouth in a few years. My guess is that 95% of the viewers, subscribers and members of ParentingDiabeticKids.com are women. The fact is, we dads don't talk enough, or write enough about our children's diabetes: not to one another and not to the general public. We have our reasons. I get choked up every time I chat with someone, either retelling our kids' stories or hearing those of others. Once or a thousand times, it doesn't matter...every time it seems to drum up the pain as though it was April 15, 2005 when JoJo was diagnosed.

Our physician told us it would get easier with time, but he doesn't have a child with type 1. I used to think it was weakness, but it's not. I just love my kids and...anyway. I've also coped by "gettin' on with gettin' on", with business or volunteer work. And while for the past two years Natalie and I have joyfully invested time, energy and money into various diabetes-related initiatives, I've been reticent to "go all out", to unload on diabetes with everything I've got. As our teenage daughter would say, "Dad, that is SO not you!" I've rationalized that our 24/7 life managing our children's diabetes is consuming enough. I've struggled with my own "guy" hang-ups as I become more passionate about beating type 1 diabetes: I'd have to talk more, blog more, write more...relate more. Yek! Well, you know what fellas? I gotta speak up, write up, blog up and get movin'. We've all gotta speak up and jack the velocity with which we act. Our children's lives, the quality and length of which they are lived, depend on our willingness to speak up and act. Are you in? As I suspect most of you readin' this are women, feel free to pass this on to someone you know and love!                                     


Armies Win Battles, Nations Win Wars.

This, from a golf tournament? Before you report me to the guys in white smocks, hear me out. By all accounts, the tournament was successful. And because of that success, many kids in the Northeast who need something positive in their lives will get it. For them, Ray's army carried the day. A battle won. Orin and Lori (if there seemed to be six Flo's and six Jackie's, then there were thirty-six Lori's), Ray's business manager and foundation director respectively, executed the tournament flawlessly, with legions of volunteers and club staff hustling about, all with smiles (at least when we saw them). I'm sure Ray's celebrity and that of some of the golfers helped electrify things a bit, but the fact is, everyone, top to bottom, was sold on the mission to support the Ray of Hope Foundation. Everyone was sufficiently motivated to invest time or money to it because of what it stands for. It got me thinking...

                                                                                                                                         

In the fight against type 1 diabetes, are we doing enough? Can we do more? For anyone with type 1, battles are won many times each day, day after day. Advances in technology have provided  tools to make the battles easier to engage and win. How much closer to our ultimate victory, a cure, have these battle triumphs (and losses) and technological advances brought us? How many more Walks To Cure, Rides To Cure, golf events, concerts and fundraisers do we support to put us over the top? How many more among us do we have to educate and mobilize? How much money is needed? Would $1 billion do it? $10 billion? If tomorrow the JDRF put out a statement that a cure was imminent and all we needed to raise is five times the amount raised last year, could we do it? How about ten times the amount? If we believe we're closer to a cure, why not raise the bar? How much time do we have?

Turn to your son or daughter and ask them.

Whaddya say? Let's step out of our comfort zones, discard our hang-ups and roll!