Newly Diagnosed T1D in Your Family? A Letter FOR YOU!

writing letterDear Newly Diagnosed Family with T1D,

Welcome.  I’m sorry, but welcome.  If the diagnosis of diabetes has entered your household and you feel as if the world has completely come undone, I would like to share a little of a journey that is now just over 25 years.

Kaitlyn was 2 when diagnosed in 1992 (Rob would be diagnosed at age 13 in March 2009, but that is a different story for a different time).

We were (are), probably a lot like you.  Two parents working, no nannies, no really big house, no brand new cars, but we had much.  Always did.  We always and in all ways had an understanding of the smaller things.  We never begrudge those who had more than us, ‘good for them’ we always thought—-we had what we needed.  We never wanted to be more than where we were….we always wanted to be ‘rich in our lifestyle’…….that would be fine with us.

When Kaitlyn was diagnosed and there was nothing but an abyss in front of us, the one thing we knew was that we would discuss EVERYTHING for the first short while until we figured this out.  Nothing would be left for chance. Remember that.

At age 32, nothing but rosy days were expected.  We knew bumps would happen,  But on September 26th, 1992 our lives would change—-just like yours did.

What will we do?  What do we do?  What will happen?  A tidal wave of monstrous proportion just wash our little boat of life and we had no way of knowing it was coming.
Sound familiar?

Maybe you have been at this for a week……perhaps a month……perhaps a year…..maybe more.

After we took Kaitlyn home from the hospital we sat down and talked.  What do we do now?  In our discussion, we decided that Jill would be the one to stop working. Once we found some balance, perhaps she would get something part time, but there were no expectations.

I was never afraid of work.  To me it was always a matter of getting the job done, not so much as how it got done.  What I mean is; when we started on this journey, whether it was driving town cars to working at a deli to making pizza–whatever it took to bring in extra money, I would do it and would do it with the appreciation that we just might make it no matter what the new normal would become.

We made sure I always found some time with the kids alone.  Perhaps it was just taking them to McDonald’s for pancakes and let Jill sleep in before I left for work on Sundays…..but it was something.  What mattered was that the kids never knew that our lives were turned upside down—-I’m pretty sure, back then, we succeeded.

You go through a lot when all of a sudden a household of two salaries become one.    We decided from the get-go, this would be a one-day-at-a-time journey.  There was stress.  It impacted our lives.  It impacted our relationship with our families who probably never really fully understood why Jill and the kids showed up so much without me, because I was working.  But it was more important that the kids were with their cousins, had holidays, enjoyed life; than us worrying about what anyone thought.

We did what we had to do.

Sure it impacted our relationship also.  But we also agreed that whatever was happening was our business and no one else’s; we would get through it.

My point in this letter to you is that no matter what you are going through, it’s just important that you keep going.  That you stay in contact with your partner.  That you do everything in your power to make sure that your child with diabetes, and all of your children, have as normal as a life that you can provide for them.  Coloring Easter Eggs at a table together can be just as rewarding as taking all of your kids to an expensive Easter show together.  Look for things, you will find them.

Make do with what you have—-openly discuss things with each other—-do not care what anyone else thinks—-stay the course.  And always remember….guessing is wrong, EDUCATION is  the equalizer in diabetes.  Get some every chance you can.

Someone once said when a door closes a window opens—-well sometimes it’s up to you to pry that window open and not wait for it to open on its own.

You got this…….you can make it……..one day at a time.  Someday you will turn around and twenty-five years will have passed,  and you will be two just months away from walking your daughter up the aisle.

SIGH

Best of everything,
Tom
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

In the Wake of Diabetes Awareness Month…….Time for Something New?

blue waterSo far during this month of Diabetes Awareness, I have read and/or seen hundreds, perhaps thousands, of postings and writings across social and other media sources. All things about education, inspiration, awareness, and advocacy.  Incredible and wonderful ‘happenings’.

And yet……

I ask myself what has changed?  No one is to blame, these are ALL WONDERFUL.  But I always believed that when the impact of something attempted does not achieve expected goals and the exact procedure is continued……well it’s time to change it up.  Perfect example is Washington DC—-oh sure, we could get into a real heated debate, but at the end of the day—-nothing changing means everything stays the same.

We, in the diabetes community, need to take a look at November and figure out ourselves for a way to change the paradigm, the landscape, the state-of-present affairs dealing with diabetes in today’s world.  The shot-gun approach of everyone doing ‘what they think’ is important is great….but the impact is a minimum.

Many major organizations fall into the trap of; “If we didn’t think of it. We’re not supporting it.”  And they instruct their members to follow their banner for what THEY DEEM important for the month of November.  Again, the same thing resulting in the same battle cry ‘people do not know about diabetes’ occurring each year has made me think of a new strategy.

Take the 10 largest organizations—-probably everyone in the diabetes community belongs to one or more of these organizations–gather them in a room (We meet at the ADA Scientific Conference because that conference is OPEN TO ALL; but I will surely settle on a conference call).
Now take the 10 most pressing topics in diabetes—Diabetes Management, Diabetes Cure, PWDS ARE THE Heroes, The difference among diabetes types and what they are and are not (caused by eating for example), Diabetes Funding, Missed Diagnosis, Capitol Hill, Diabetes in third world countries, Diabetes in School, The Psyche aspect of diabetes, Diabetes Awareness.  Pick one; add your own.
Now for 11 months of the year, each organization can/will do ‘their own thing’ as they deem necessary but for one month out of the year, Diabetes Unity Month–formerly Diabetes Awareness Month–all 10 organizations choose one overall topic and each work that topic for the month with their entire membership——and wrap it all in blue.

Imagine.

Imagine if all those who were active in the diabetes community WERE ALL ROWING in the same direction for the month.  IMAGINE!

I don’t know if attempted successfully, if this will/would work.  WHAT I DO KNOW is that I have been at this for over 25 years and many of the topics mentioned above in the overall arc of diabetes knowledge have not changed all that significantly outside of our own diabetes world—-the same topics are still looking ‘to catch on’ in the mainstream.  If started years ago, by now, we would be through each topic twice already and half way done with a third round.

Two concepts/ideas have been unified and have had good degree of success.  The color blue, and the blue circle. Everyone has been behind these two……so THAT makes me believe that when unified and rowing in the same direction the topic chosen will have a more powerful result.

I love all that so many people do but clearly every group decides ‘this topic’ is what will be chosen to push in November—-but the directions chosen, although diabetes-centric are all going in different directions.  That, as a principle, almost seems absurd, does it not?

If the ten organizations cannot come to an agreement on which topic is the most important one to tackle, easy decision—-no vote—-put the top ones in a hat and pull one out and THAT is where the energy is spent as a diabetes community for next November. Okay, DiabetesDad just has one of those crazy ideas again. Okay, so let’s try this; just try it for two years and see what happens.

Writers, media, membership, bloggers, organizations all on one topic for the thirty days of November.  Will it work?  No idea……but I know what has not worked for the last 25.  Send this article to the heads of your organizations, ask them to send me their comments/thoughts/beliefs.  I will keep them anonymous but let’s find out the feasibility.  Share this—-write about it—-spread it around.  Let’s not just talk about it—-send this article to the top staff leadership and the executive boards…..let’s make an effort to row together because when we do I’m 100% positive that the world will get caught up in the wake of diabetes awareness—-and rest assured the wake in THAT water will be November Blue.
I am a DiabetesDad.
Please visit my Diabetes Dad FB Page and hit ‘like’.