If Only Biology was a Device

I have often wished that that ‘biological’ make-up of our kids living with diabetes were the same make-up of a diabetes management device. My daughter was one of the first kids wearing an insulin pump on Long Island. Hard to think that the original proto-type for an insulin pump looked like the one in the picture. Imagine walking around with that thing on?

BUT………

……..once someone engineered the workings, the world of device research could take their shot at making it faster, smaller, quicker. And once THAT was done they could connect to other devices to dispense insulin. It was easy to do that because the device was there. The world just had to make that device better, and they did. As with the insulin pump, so many other devices and companies sunk everything they had into making ‘their device’ the best one out there.

And each step of the way since the day insulin was discovered, less than 100 years ago, the headlines all touted ‘The closest thing to a cure for diabetes.’ Uhhhhhmmm…..no.
It seems devices get the good press while that all elusive biological research continued ,but too slow to our liking .

Years ago, I sat in a meeting where the conventional world stated that the transfer of islet producing cells from one individual to another would never work………but here’s the thing…….it did work. But the same nay-sayers said that well sure, but they are on immunosupressive drugs. But the truth is that each person in those clinical trials suffered from sever hypoglycemic unawareness. They could not hold a job, drive a car, and in essence their quality of life was severely impaired. So those who ‘were in the know’ kept force-feeding the world that the immunosupression drugs was a deal-breaker and abandoned hope and told the world they should abandon that idea as well..

Well not everyone and thank God, not everyone.

For the largest amount of those in the trials (some have been off insulin for over ten years) even those that ended back on small doses of insulin or completely back on insulin altogether, their quality of life changed forever as their hypoglycemic unawareness was no more. But I’m not touting that the cure is here, it is not.

But I have a question, what if someone stated way back when; “well that insulin pump is just too big, forget it?” They didn’t. They kept at it.

And we have to make sure that the world of biological research continues to ‘work at it’. Now across the world various many Researchers are working on figuring out a way to implement these biologically produced cells in the right place in the body, protect them, sustain them, and have enough to go around. Now many people think that ‘big pharma’ will do everything to prevent this from happening. I don’t think so, but let’s say for a second that the belief is true, do we just say okay and walk away?

If there is one thing I know about this wonderful diabetes community, is that we never walked away from a fight. Whoever and wherever you choose to support is ALL YOUR CHOICE…….but if we know what works but has hurdles, why would we not demand that as much money as possible be spent to eliminate these hurdles?

“Re” — “Search”—to look again.
And again, and again, and again until we get there.
Biologically?—just like the backpack insulin of yesteryear—–it needs to be improved, but not abandoned. In fact all steps surrounding this research should be ramped up if you ask me. We need more looking into this area, and all surrounding ideas.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

PLEASE Learn this Phrase: “Ask Your Medical Team.”

Whether you have been in this diabetes world for a day or ninety years, the things you have gone through have created volumes of incredible and useful knowledge. Much of that experience can help others, but we also ALWAYS and in ALL WAYS must remember that it very well may be that it is only relative to our own experience.

Once again, I read where someone came on line who had reversed the necessary doses of insulin for their child. I was amazed at the lack of times, those who had suggestions, that did not begin their statements with; “This is what we do, but call someone on your medical team first.”

THAT is the ONLY ACCEPTABLE discussion to have. If you get annoyed at me for saying that, well that’s fine. This is not my opinion. We, all of us; ‘WE’ ARE NOT DOCTORS or trained enough to give medical advice. There are many medical professionals on our team who have both years of education and experience that we pay for; for a reason. This is not about an experience where one of us proved our medical team wrong on a particular isolated incident; true, no one knows our children better than we do. So there are always times our medical team will say something, and we will discuss the point. Many, if not most, of those times our medical team will listen and a correct course of action will be charted.

But please remember that should you seek people’s opinions on what they did for their child regrading their diabetes, whatever opinion they suggest, know this—-IT IS JUST AN OPINION based on their individual experiences.

I shutter to think that a newly diagnosed mom will one day go online and seeks advice and someone suggest something not knowing ANYTHING else about the situation and the advice is wrong because there is something else going on that is not known. The results could be catastrophic.

Social media is hugely powerful and helpful Very simple rule to ALWAYS remember; whether you give or seek advice know that first thought, comment, or course of action should always be, ‘……ask your medical team first.

Of course your experiences can be HUGELY helpful. Your insight HUGELY needed. But a medical team must always be involved.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Are You a Mom to a Young T1D?

Dear Mom (Dad’s Too),
I have a message for you.
You may not know me……you may have read something I may have had something to do with regrading diabetes…….you may not have read anything at all. In 1992, at the age of two, my little girl was diagnosed with type 1 diabetes. I have stood in your shoes. I asked the same questions you ask every day since diagnosed. Questions you ask even today.

I asked if she would have a normal life in school? Would she date? Would she have friends? Could she go to parties? Could she trick or treat? Could she ever be allowed to go anywhere without me, or her mom? Would she get a driver’s license? Would kids make fun of her? Would she be embarrassed about her diabetes, and tell no one? Would she graduate college? Would she get a job? Would she do what she really wanted to do? Would she EVER meet the right person? Would she be looked upon as damaged goods? Would she ever get married? Would she ever have kids?

Let me start with the last question, first. I just found out that my daughter is pregnant. In July of this year she will give birth. She and he husband could not be happier, we are a close second on that happiness She just graduated with her FNP (Family Nurse Practitioner) and will open her own practice. Do you see the trend occurring? Her life was a simple philosophy, if she wanted to do it whatever it was, we not only encouraged her to do everything and anything she wanted, but helped map a roadway to get there.

We did not have the technology that is available today so yes, we worried about her dying in her sleep. People d today too but we had none of those tools back when. If needed….it was a pot of coffee and determination. We worried about her going so low in a place that we were not, that we thought she would lapse into a comma. We were frightened. We were scared. We knew little. We. Just. Did. Not. Know.

But we did know this.

Learn this mom. Learn it now. Learn it good. There is an equalizer to your child’s life ahead with diabetes. That equalizer is education. Learn everything you can about this disease. Social media is a good place to chat, but it is not the baseline for your education. There is no shortcut either. Read. Learn. Ask Questions. Ask again. Read again. Read more. Find out the correct answers from professionals.

Become a sponge. Absorb everything. Give your child every opportunity to forge the life they want. To conquer any mountain. When our daughter wanted something we figured out a way to say yes. Some times the only reason to say yes was that she asked; and we also knew when there were 30 other reasons why it may not have been such a good idea. But the one reason out weighed the other 30 each and every time, she wanted it, and there was no earthly reason to say no.

We also knew that she lives with a disease. And no matter what we could do, it may take her away from us. We could not do anything about that. But we knew that should that happened we would have to be able to look ourselves in the mirror and answer 2 questions: 1. Did we learn all we could to empower her; and 2. Did she live her life as she wanted. We did that.

After that we walked through life in God’s hands.
Even without diabetes, we all would have to live that way, wouldn’t we?

Then our son was also diagnosed at age 13 in 2009. And we learned all over again. Butt our kids are worth it, right. He was bought up on no boundaries as well,only his imagination. Two years ago, his company moved him to their corporate headquarters and he was one of the youngest person to ever be in his division.

No Boundaries.

In July my daughter will give birth to our grandchild. She has done every single thing in life she has wanted thus far. We know how blessed we are. We also know that there was much work by all of us to get here today. Your child will get there too. Kaitlyn said to all of us in an interview she did with a television news station years ago, “Diabetes is what I have………it is not who I am”. Amen little girl, Amen indeed.

And that same little girl who taught us years ago is the woman who will make us grandparents in July. Pretty cool…….huh?

Learn that mom reading this, your child’s world awaits.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Different Races, All Trying to Help

A few people I know attempted to do something this weekend that, I guess, one could say that they had no business to attempt.  Both had to do with feats of running.  Both have ailments or other reasons why their bodies are not meant to run.  I have no idea how long, or even if, they trained for these runs.

My cousin trained for months to run in the NY Marathon last November in New York City.  My cousin’s training was being done at age 77.  He did it all under medical supervision and he ‘did it right’ from all intent and purposes one undertakes these endeavors.  Just prior to the race, while training, he collapsed in the street and a passerby performed CPR, it saved his life.  It’s been a haul but my cousin is a fighter and the closeness he has to his own family, well that makes the fighting worth it.

He was running to bring attention, education, and a few bucks to Autism which has hit out family, and hit it pretty hard.  The other two I referenced at the onset were doing it for diabetes awareness, education, and a few bucks to a foundation in which they believe in for diabetes, our family knows about that as well..

THEY ARE ALL, HEROES.

They chose to live by the phrase, Just Don’t Do Nothing.  Make no mistake about it, just because they may not have made it to break the ribbon at the end, they accomplished their goals.  In fact, in one case, her story was so moving I donated to her cause.  Had she not been challenged beyond physical  endurance; I never would have known her story.  Her story pulled at my heart. Her apologetic tone of being unable to make it to the finish line captivated my attention.  As I read her story my mind was continually filled with one of the greatest lines ever uttered in movie cinema history from Lord of the Rings, “…….my friends, you bow to no one!”

Anyone who decides in their head, I will attempt this, crazy as it sounds, they get my attention and they should get your attention as well.  Someone else has REALLY peaked my attention recently because she is attempting to do something almost as impossible as well.  She is running a different kind of race and in my humble opinion, we probably should pay attention.

Quinn Nystrom is running for Congress in Minnesota.  She is an author (If I Kiss you, will I Get Diabetes), a tireless advocate for diabetes, and a person who has lived with the disease.  Quinn has held elected office as the youngest person ever elected to the Baxter City Council.  One of the reasons she is running for Congress is because of unaffordable health care, she knows firsthand about the cost of insulin.  So many times we tout and shout, “If only we had an inside to Washington.”  Well now is your chance.  I’m doing what I can to help Quinn get elected, because I cannot vote for her.  But I also KNOW WE NEED A VOICE in Washington DC; Quinn’s voice.  Go to https://quinnforcongress.com/ and figure a way you can help also.

All of these individuals, although running in completely different races, are running because they cared enough not to sit on the sidelines.  I’m in awe of their efforts and I know there are so many more trying to make a difference.  But the only way to get in the race, is to start running.  What will you do this year?
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Living Life is so Much More than Diabetes…..NEVER Forget It!

Life was normal. Perhaps a trip shopping or a relatives house. Your child starts to complain about stomach aches, nausea, but the flu has been going around.
It’s just the flu honey.
Yeah, the flu I’m sure.
But the clock is ticking.

Your child is home from school.
This is different, honey. I should take her to the doctor’s office.
Tomorrow, we’ll see tomorrow.
But the clock is ticking.

If you have a child with T1D, the first two paragraphs should have caused a little anxiety. Perhaps you are brand new. Perhaps you have been ‘at it’ for years.
It’s diabetes. It’s the way it is. It’s the way it’s going to be until someone untangles this mess and comes up with a cure.

Stop blaming the pharma companies for ‘hiding a cure’, they’re not. If we have learned anything it is that if one entity is ‘doing it’, others also know how. So ‘hiding it????–not so easy. Diabetes is just that complex. But many are working on it. Many. Technology of today is so much better than the technology of yesterday, and tomorrow’s will be THAT MUCH better. We’ll get there. I’m more sure of that now, than when we started this journey on September 26th, 1992

So buckle your seat belt and keep the focus where it needs to be. On your child? Not necessarily just on your child but on getting your child back up and back as close to life as it was before diagnosis. That’s our job, as parents. If you are divorced, hear me, that is still our job as parents. Nothing matters more.

The psyche of diabetes is as important as the management of it. Get your child back up and back into life. Be strong, but understanding. Let them lean but don’t let them sit. Get them back to where they were. That’s our job as parents. Cry? Sure but not in front of them. If they want to cry, let them. Guide them.

I have known thousands of families where diabetes entered the household. The kids have done incredible things to fulfill their dreams. There are always ‘what about—what about’, that ‘might happen’ but only take them on when you have to. Otherwise, let them do what other kids do……after all, that’s what they are……..kids. Upon diagnosis, they did not turn into glass, don’t treat them as if they have. Hear me clearly, do not just poo-poo this disease, it’s a monster. But all monsters can be trained. Train it, or it will own you. Don’t let it. I’m certainly no smarter, better, nor stronger than you. I asked the questions of those who have been through it. I found answers.

My oldest son is living his dream. Not your dream. Not someone else’s dream, His dream. He runs into fires when others run away. He works patrolling the grounds of NY State. He works hard, he plays hard. He gives back. He is where he wants to be. My youngest two children each have type one diabetes, and you know what, they’re living their dreams as well. They all have someone in their lives to share everything. They are all living life.

That’s the goal. It takes work. But as I said, I’m no smarter than anyone else but we made sure our kids had choices. They made good ones. Let yours do the same. Don’t let one ounce of your precious energy be wasted in any other way. Period.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Holidays, Diabetes, Your Child, Relatives — Feeling the Stress?

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So you are home enjoying the holiday preparations when your doorbell rings. You answer the door and the deliveryperson is there with a box from a relative. The size of the box surely peaks your interest and you carry your new found delivery to the kitchen table and carefully open the box. As you open it you see the contents inside: a load of goodies that sort of resembles the picture; what goes through your mind?

Options:
1. What a lovely gift, so nice of them to think of us?
2. They know we have a child with diabetes, why would they do something so hurtful?

Which one did you choose?
If you chose the first one, go about your day.
If you chose the second, pull up a chair.

If you chose the second, your feelings are real, don’t just push the aside. We, as parents, are constantly asking ourselves, “Why do others not understand what we go through?” With the upcoming holidays, people will say and do things that, very well, might enrage you with their actions or words.

Since you cannot do anything to prevent people’s words or actions, you need to create a buffer for yourself or you will be pulling your hair out before the turkey cools. First point; I have learned after 27-some-odd-years at this that no matter what the words said or the actions done, believe it or not, people’s comments are because THEY THINK they are helping.

When any of these occur, which of course, are usually said in the presence of the entire family:
>We are having gravy, sweet potatoes, mashed potatoes, and stuffing and I know little Susie has to be careful of carbs so I cooked her her a stringbean for dinner.
>Kids help yourself to the cookies and candy but remember Little Johnny can’t have any…….Johnny I have a Ritz Cracker with cheese for you.
>Oh Honey (being said to you) are you sure she should eat that with her disease?
>I have candy canes for each child and Johnny I know you cannot eat candy canes, so here is a beef-jerky to chew on.

Okay—-over the top, I know, but if you read these and smiled a little, you are on your way to realizing how you handle the clods when they say the wrong thing. Do not feel the need to correct them with a lecture at this time (and you’ve already nixed hitting them with Christmas Tree branch with the angel on it) but with a few words and a genuine smile you will accomplish your goal. “Really it’s okay, Johnny knows how much of the candy cane he can eat….please give him one too.”
“Dinner will be fine, we’ll help little Susie, thanks.”

Short and sweet. If they do not know the right thing to say or do before you arrive for the holiday festivities, I promise you they are not going to learn it on the day the family is gathering. SO YOUR JOB is just to diffuse the situation and move on. Don’t see ‘Christmas Red’ because of a stupid statement because here’s the thing; it’s not as important for them to know as it will be important that you and your child know. And even more important to know that your child is, once again, reminded that you have their back.

If they see you getting upset, they will too. If they see you getting angry (and hear me on this) they will think they are causing the strife and not your family member. It will impact them as well, THIS you do not want, ever!. Take the high road. Smile. Be straightforward, direct, But make it quick and move on. If you do this, YOU CONTROL THE SITUATION AND THE OUTCOME. And THAT is why you will feel better about the situation, and yourself.

In our house, we love the Christmas Holidays. They are a BIG deal, My daughter, since the day she could unwrap a Christmas gift, truly and honestly gets excited about opening gifts——even her stocking stuffers. Her face is priceless and genuine when she opens her gifts——she has ALWAYS been this way for all 29 years of her life. When Jill or I were feeling that ‘Christmas Red’ coming to our face, we would think of her eyes, her face, her smile—–THAT WAS IMPORTANT to us to maintain, no matter what. And no idiotic or misguided statement/action from anyone was going to ruin that.

You may not succeed right away but in time, your persona will take on a confidence that will demand that everyone check with you privately and in the correct one-on-one setting it needs to be. Jill’s very presence in the vicinity of my daughter (and then later adding my son also) demanded that anyone wanting to know anything diabetes related ………..came to her first. And they did!!!!!!

This came about because Jill has an electric smile, but when she said something about our children’s diabetes lives, one knew, quite frankly, it was law. I promise you, you will get there but don’t give into just getting angry, because you will get frustrated, and feel like you are not in control of the situation. You cannot do anything about what people say or do, but you can do something how you hear it. So when the Grinch shows up, you control the outcome—hold up a piece of mistletoe and kiss them on the cheek, and let them know who is in charge.

Happy Holidays
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Our Back-ups had Back-ups

When Kaitlyn was first diagnosed, and the credit for this falls squarely on Jill, our back-up plans for Kaitlyn’s diabetes had back-up plans. When it was her glucometer, there was the one she carried, the one in Jill’s pocketbook, as well as the one in the car. There were always three different angles to the end game on anything diabetes. Interesting enough, over the years, the approach changed little.

I would strongly suggest that every parent consider the same strategy.

No matter what we have used, no matter how technology has changed, there was always a back-up plan…….for even the back-up plan. What that plan might be is entirely up to you and your family, but if you have a dollar to bet on anything doing with technology, bet on this one fact……it will fail.

Do not wait until it fails to be prepared.

When the technology stops, the ingenuity must, MUST, kick in. What was once a relayed signal from the cloud might become a manual glucose check and a phone call or text. What was a working glucometer, becomes using a spare one just in case. What was an insulin pump dosage, becomes an injection.

There was much online frustration relayed in our community with the recent Dexcom failure to transmit information. People were saying all sorts of things; how others should feel about technology, and what they should not feel, and what right anyone has to have such feelings, or not have. People became angry at others and felt people should mind their own business and not tell others ‘how they should feel’.

In my opinion it should come down to one thing, and as I stated, credit my wife; when it comes to anything diabetes, your back-up plan needs a back-up plan. Whatever that is or might be, I leave to you and your family. But if you do not have a back-up plan to your back-up plan; you will one day experience the panic of ‘not knowing what to do’.

And that’s not a good place to be. Plan now for the next time because I most assuredly guarantee…….there will be a next time.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

No 2 are Alike

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So as we approach our third ‘winter’ in South Carolina, I am reminded of the one thing I do not miss about living up North……..snow. I was never a fan of snow. It always looks beautiful and then the reality hits that those beautiful flakes will not remove themselves from your car and your property.

The one thing about snow that I always found fascinating was that, as the saying goes, no two are alike. Millions and millions of snowflakes and each as different as the next. This was my assessment of those with diabetes for years. I even called it the snowflake disease as how it impacts one may be completely different with someone else……and in many cases it does impact two people completely differently.

Remember that the next time you want to jump in and help someone with a diabetes inquiry. The way diabetes impacts your child could be 180 degrees different than how it impacts someone else. But withing this discussion is also a celebration of how people move beyond the limitations of this disease in their own lives. Just this week, one young man made the junior Olympic team, one starred in a football game, one danced the Nutcracker, one entered medical school, one is graduating Family Nurse Practitioner school, one went away on their first weekend without mom and dad and ALL OF THEM did it with diabetes.

So as we head into the holiday season, celebrate the uniqueness of your child. Celebrate that what they do, and remember that they do it while managing a truly tedious disease. A disease they did not ask for. A disease that was thrust upon them. Celebrate their uniqueness. And while your at it, give a pat on your own back for all you do to help them.

No two snowflakes are alike. And neither are your children. Their uniqueness is worth celebrating……in fact, it melts your heart, doesn’t it?

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

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This Month, ‘Diabetes’ Gets Nothing!

Dear Diabetes Awareness Month,

Sorry I have not paid you so much attention this year. I mean I certainly continued the advocacy I find so important. People need to be made aware of your signs so they can get proper care before it is too late.

I am also not letting you off the on letting insulin prices go just as high as they want; we’ll keep fighting that too.

But I am spending my time enjoying the things you cannot keep from my kids. I visited Minnesota this month and shared with my son his new digs at the corporate offices of Best Buy. You know, the place he could not get to because he was too young or his diabetes might get in the way. Yeah; that didn’t happen and now as he approaches his second year, we continue to be so proud how he and his fiance are doing out there, so sorry I was not dwelling on just the diabetes that week.

Oh, and also sorry that I could not spend more time with you in the middle of the month as I had to visit Kaitlyn; you remember her don’t you? You know the one diagnosed at age two, the one where one medical professional told me I should be lucky enough to hope for just getting through college. Never knew if they meant that diabetes would be so hard she would be unable to balance it with her studies or that she would be alive at this point……….well she graduated college. Graduated nursing school too. Next month she graduates as an FNP—or Family Nurse Practitioner. Take that!

Always surprised they named a month after you. It should be about those who, time-and-time-again, prove that diabetes will not stop them. It should be about those who have accomplished wonderful things despite having you in their lives.

They excel, they find great jobs, they get married, they have kids, they succeed—they do everything that you thought you would stop them from doing. So perhaps we should call November Hero Awareness Month, because quite frankly, you do not deserve to have a month named after you. But our kids do. And the kids we lost do also. They lived as heroes for as long as they could until they could not do it any longer……and you took them.

That’s what happens in a war. And this is a war. And all of us will do battle every day.
Some day, you will lose and we will win. Because you deserve nothing form us and nothing is what we are ready to give to you……..least of all to even have a month named for you. Better we stress the “Awareness” in Diabetes Awareness Month……and give you credit for nothing.

I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diabetes Awareness Month……Key Word: AWARENESS

Well here we are again, Diabetes Awareness Month.  Trending are many people asking to post something each day of this month.  How many test strips do you use, how many units of insulin, how long have you lived with t1d????  Something different each day of the month.  I’m not so sure I would want to break down my two kids’ diabetes into a 30 day ‘advent-like’ calendar of what we have been doing for the last 27+ years, but if it works for you, why not?

But WHATever you are doing for this month, ask yourself this question as you contemplate what to do to bring awareness to the outside world; ‘who is seeing this?’  It’s great to show the diabetes community, but here’s the catch, they know already.  Whatever you are doing, and it’s up to you whatever that is, but make sure you are monitoring where your posts end up.  All year round we are certainly here to help one another but November offers a very specific charge; awareness.

SO encourage people who read your posts to send them to those who do not know anything about this disease.  Figure out some things to do, here are a few examples;  Encourage your kids to give a presentation in school about diabetes awareness; go to www.getdiabetesright.org and download one of the many awareness posters, print a bunch, hand out and hang throughout your community; donate to a diabetes charity, a camp, or any diabetes organization you like; ask to speak at one of your community meetings like Rotary Clubs, LIONs Clubs, Chamber of Commerce about diabetes awareness; wear blue like my dear friend Paula does all year round each Friday (my Fridays are just not the same if she doesn’t) but now you have 30 days–wear blue, and just do something to get that word out; just don’t do nothing.

This month is all about Diabetes Awareness…….so make people aware!  Not those who know already but those you don’t.  You might just save a life.
I am a diabetes dad.
Please visit my Diabetes Dad FB Page and hit ‘like’.