When You Need Help…..Who Helps You?

pulling-out-hairAs I read various posts, I rarely see or hear about what a spouse/partner does in the management of a child’s diabetes. 

Let’s face it, sometimes you want to pull your hair out trying to find help but who DOES help you when you need it?

I write often and at her request, I mention Jill rarely in my writings, but let there be no mistake about it; my kids are alive today because of the amount of work their mother puts into this world of diabetes.

Back when Kaitlyn was first diagnosed and we discussed and decided that I would be the one to work and Jill would leave her job to care for Kaitlyn; we had a great foundation for which to move forward. 

We discussed and agreed.

I did not know it at the time but the fact that we discussed, and it was not just ‘assumed’ who-would-do-what, began a healthy foundation for much of the care for our kids.  Now I’m not saying there were not challenges, any marriage has challenges, but when it came to the care of our kids we learned that discussions needed to be crucial for us to understand our roles and also the role of diabetes in our new normal.

There was a mutual respect for the fact that I knew Jill had it no easier than I, and in fact, probably tougher.  It takes a lot to jab your child a million times and watch every step they take at home, at school, and in life.  No one I know is better at this, than Jill.  When I could, I would take the kids and try to get her some space, but her efforts were herculean since day one.

It was difficult to work 16 hour days seven days a week for as long as I did but somehow we made it work.  On many occasions I would come home and find that Jill fell asleep with all sorts of diabetes information all around her.  It was never enough to ‘just do’, it was always about educating ourselves on what was new.

As many of you know, there is a look that glazes over our kids when a hypo/hyper creeps into their active lives; Jill could, and still can, spot it a mile away.  She still reads up on what is new and what is coming and shares that with Kaitlyn (and now Rob also).

I have always stated that I have it easy compared to all that she has done and continues to do.  I know that many ‘go it alone’ and you have tremendous respect from those who know what you are up against.  Hopefully everyone has at least one person to help even if a spouse/partner is no longer present.   Who do you turn to when you need a break or  to those who have help, kindly share how you ‘divide up’ the day-to-day management of diabetes in your household.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’

Who Digs Us Out????

snow 2013As I had my morning coffee, today, the day after the big storm, I looked out the window at the magnitude of what will lie ahead for us today.  A whole lot of digging.  Those of us who were hit by the storm will have a choice; dig out alone or enlist the entire family to grab shovels and get to work.

It will be easier if we all help I would think.

As I stared out at the snow, I started to think of the entire team we deal with every single day.  Have you ever stopped to think about the entire team involved with your, or your child’s, diabetes care.

Just think.  From the medical team, to the registered dietician and psychological team, to the team at school, to your neighbors, to those who educate, to your own family, to the on-line community, to those who make all the needed supplies, the assembly lines, to the researchers, and even to your friends.  At a recent CWD Conference, one child offered up that even the landlord knew what to do if ever needed. 

It is a team.  A huge team and every now and again we should stop and realize who is involved, how much they are involved, and give thanks that they are involved.  Some we may never see to meet but they are indeed there.  I get it; for some it is their job; but it is great to have those that care so much, isn’t it?

Diabetes is a HUGE job and it takes many to ‘dig us out’ each day.  Each one a personality that is added to our life.  Each with a vast difference of knowledge and personality.  Each one unique to enrich our lives;…..unique…….as, say…….snowflakes.

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

A Family Needs our Help…..Please Respond and Share.

help orangeI received a message yesterday about a newly diagnosed child and the dad stated that his son felt he would not be able to do many things. 

I disagreed.

I was just wondering today——what is the single biggest accomplishment that you have succeeded at with diabetes? ….or in what has your child done successful with diabetes?  Do not think “landing on the moon” ideas–just every day successful events.  Sports, arts, academically…whatever.

Please share as a reply on this post and not just as a FB comment so all may see.  I will compile and give to this dad; first name of children only please (and age).

Thanks.

I am a diabetesdad

This Christmas…..We Welcomed Back the ‘New Normal’.

It was a great Christmas.  It’s quiet in my house as I write today; much-needed rest for everyone.  I’m not sure if it is the joy of having a newly engaged couple in the house or the anticipation of good news or just having everyone around with ‘our new normal’.

We have had so many years under our belts with diabetes and we have learned to adapt; even when our second was diagnosed; we kept adapting.  Our base line (when I say our; I mean all those who live with diabetes or a loved one with diabetes) is different from most.

Life gives us so much to deal with that I never thought I would ever say ‘please just let us handle diabetes’ for a little while.  I hate dealing with that also but with everything we have been through over the past few years, it was nice to have just the ‘new normal’ back again.  We do not really lay it ALL out there……some we do but not all.  Some people know, others do not need to know.  I have written before, it is life.  Life has been a little cruel over the last few years to us.

Many people have had life throw them major curves also.  So unfair. 

On of my favorite stories is to tell a lesson I learned from my mother-in-law who I loved dearly and one we lost this year, sadly.  My father-in-law, her husband, died in September 1999 just one week prior to a walkathon major event that we had participated in for years.  The day after his funeral she called me and the conversation went something like this:
“Hello Dear, what time do you want us at the walk?”
“The walk?”
“Yes.”
“Are you sure you want to do it this year?”
Silence.
“Tom, life is for the living.  Pain can stay, but we must move on or the pain takes over. SO what time do you want me there and what should I bring?”

I miss my mother-in-law she was the definition of class and she blessed our lives for many years with ‘pearls of wisdom’ such as these.  I called them lessons-in-life, she just called it conversation.

So this Christmas season was a lot of laughs and much fun and excitement.  More so than in the last 3 or so years.  I think we deserved that, even with the new normal, it’s time to move on.  And we will, as many do.

I am a diabetesdad

Newtown, Ct. Tragedy: We, at Least, have Somewhere to Turn.

What do we do now?

Anger.  Much anger.  Debate.  Much debate.

In the aftermath of the Newtown tragedy I find myself reading many, many posts.  Mental illness, gun control, school safety.   What do we do now?

I’m not someone who would even think of myself as a professional or an expert but it seems to me that these discussions are attempts to somehow erase the indelible horrors that have painted pained images into our minds.

After spending 30 hours in the midst of the horrors of 9-11; it took me years to be able not to see the images that were burned in my mind every time I shut my eyes.  The nightmares and visuals happen from time to time to  this day eleven years later.  I remember the days following that event and how I tried to somehow to “make sense’ of it all.

I came to the realization, with help, that we cannot make sense of it all.  In fact, hard as we may, we cannot make sense of ANY of it.  Because none of it makes any sense.  What we can do is become more aware of our world and what is important.

We cannot control that which is thrust upon us by someone else’s actions.  My friend Moira stated in a post recently that (paraphrased) we the diabetes community are very aware of dealing with tragic events.  This is not a comparison to anything else except to state that we in the diabetes community have invested our hearts, our pains, our fears, our joys, and so much more in the community we belong; the diabetes community.  And it is almost as if we are more prepared for……..well much more than many others who do not know what we go through, and do not know about community until it is needed so badly.

So when everything started happening, I sought out those who are in my community.   Those I turn to everyday.  I was not disappointed.  SO many perspectives and what I learned from our community is to not try to find sense in anything, but rather; those we hold close…hold just a tad closer.  Notice the fresh air.  Notice the sound, the music, the love which surrounds all of us.  The DOC allows us a place to turn.

It has been what has gotten us through before, and what will get us through again today, and what will also be there for us tomorrow; when it unfortunately will be needed again.

In the diabetes community, we do, have each other.  I am grateful for that.

I am a diabetesdad.

Death Too Soon…..We Can All Help……Even a Little

Take a good look at the photograph.  A father and a daughter; the bond of which love is universally understood.  They are at a charity fund-raiser to find a cure for the little girl.  Her name is Megan and her father worked tirelessly to help raise funds to find a cure.  Interestingly enough, it would be a cure for him also because he too had Type 1 diabetes.  But daddies do not do for themselves, they do for their children. 

Imagine that bond.  Even tighter if ever there could be one.  Both having Type 1 diabetes.

Her face is absolutely priceless, she is just gorgeous.  Would you not agree?

In an almost instant Megan, and her family’s life would change…….unfortunately forever.

From my good friend and super-dad Tim Brand who wrote:
I remember seeing another sad post about someone passing away in the diabetes community, but this hit close to home. Another d-dad passing away at too young of an age. Another family lost their hero, kids lost their father, a wife and mother left to grieve, left to wonder about her family. So much does not make sense as to why a man of 42 suddenly dies. Makes less sense when its a d-dad who is the primary bread-winner. That leaves the wife and mother left to wonder about tomorrow. The Doss family has been left to wonder and they need our help.

Brian Doss was a super-hero dad.

And it is our help we will give Tim.  Look I know everyone has their hand out at his time of the year but if we cannot come together to help one of our own…..where does that leave us?  Imagine if 1000 people just gave only $10.  Just ask yourself one question: Can I give just a little bit…….a little bit…..and do it! 

I have said 1000 a times, any writings I do must come down to us ‘not doing nothing’ and if ever there is a chance to help someone……I must make that attempt, we must make that attempt.  There by the grace of God, go all of us.

Go without that beer or pack of cigarettes this week.  This family is devastated.  So many times we give to great places and organizations—-this is a direct hit on a family we know and we care about.  Search your heart….and give something…..anything.

You will feel good about helping one of our own.  Losing a super-hero-dad is crushing.  By all accounts, Brian was a super-hero-dad.   Let’s show Mary Ellen, his wife, and his children that we do care, and will care.  

Their hero was taken and can never be replaced.  At least let’s try to give them some financial relief……….imagine the holidays without your hero! 

Go here: http://www.giveforward.com/dossfamilyfundraiser ……..take a final look at that picture…….do it because Megan’s daddy would have most undoubtedly have done it for you.

Thank you.

I am a diabetesdad.

Emergency at 43,000 Feet.

“Ladies and gentlemen, this is your Captain speaking…….”

The tone in his voice sounded different from when these normal-type announcement comes from the cockpit.  Up until this point we were on a non-stop from the UK to NYC’s Kennedy Airport on an uneventfully calm flight.  This was about to change.

The Captain continued, “We need to know if there are any medical personnel aboard, if so, please hit your flight attendant bell.”

Ding.  Ding.  Ding,  Ding.   Well at least that was a good sign.  Four people rushed forward.  Much activity as we were asked to hold our seats.  And after 15 minutes of activity the Captain returned.

“Ladies and gentlemen, this is your Captain again; we know this is a nonstop flight but I have just requested for an emergency landing in Halifax Nova Scotia for a medical emergency.”   An obvious heart attack. I was sure.  We landed, EMS came aboard and the patient was removed.

As I left the plane when we landed in New York, the flight attendant noticed my Children with Diabetes shirt I was wearing; “If I knew that I might have called upon you.”

“Excuse me?”

Our medical emergency was someone with diabetes who left what she needed in case of an emergency ‘low’ (she was quoting the person who was traveling with the person needing aid) in her suit case.”

“You mean glucagon?  You probably should have made an announcement; we have one with us that we gladly would have given the medical personnel.”

Now there is much wrong with this conversation in my eyes and at the top of the list is what was this woman thinking that she did not have everything she needed with her while traveling?  I cannot answer that question and the woman dropped so low that she went into convulsions; hence the emergency landing.

So we learned, as we knew, that NO ONE who has diabetes should not have EVERYTHING they need when on a flight.  You would think common sense….no?

The second is a suggestion we might want to use.  When traveling with diabetes supplies, you might….notice the word; MIGHT, want to consider letting the flight attendant know that should a diabetes emergency occur while you are flying that you have many supplies with you for whatever the reason (you have diabetes or your child has diabetes).

This may never happen again, but when flying again with one of our kids (when we will have most of what is needed, as much as our kids will have as well…I know they are old enough to have it on their own….it’s a ‘parent thing’….parents know what I mean), I will absolutely make sure the flight attendant knows.  I may not agree with ‘how or why’ this emergency happened but once at the emergency stage, it could have been really helpful to know that there was help just 10 rows back.  That would be a good thing.

If we all did this every time we travel, perhaps one life might be saved, and then it would all be worth it….don’t you think?

I am a diabetesdad.

 

T.G.I.F. (Thanking Great Individuals Forever)…….these dads are serious.

Today’s T.G.I.F. are a group of men I met recently.  When I was over in the UK with the Children with Diabetes I met a group of dads, an amazing group of dads.

They are regulars dads, husbands, partners, with regular jobs, likes, responsibilities and in many ways are just like any other dads…….but they have achieved something that I have not witnessed before in my 20 years at this ‘diabetes’ thing…….they have a bond, a really tight bond.

They have created a mechanism that works for them incredibly well.  They have a trust.  They have a place they go where they can talk about anything they want from diabetes to sports to anything else that comes into their lives that they need to discuss.  They do it in a place that they have built where there is a comfort level knowing that it will stay within the confides of the group.  When it comes to dads, this kind of group is unique to me.

There ARE dads groups and discussion groups that are run very well, but these men have made a location where it is mano y mano only to discuss whatever it is they need to discuss in dealing with diabetes and life.  This is a support group with a rock solid foundation of trust.

My main point about this group is that they came together and created what they needed to work for them.  Many may not believe it is ‘okay’ to have a mens only and invite only group; and surely you are entitled to your opinion.   But as I read over some of their subjects that are discussed, I was moved deeply as these men truly pour their hearts out to each other when it comes to the way they deal with diabetes in their household.

This is not a “man vs. woman thing”, rather this is a place where opinions on everything are on the table; for discussion, for help.  Many professionals will tell you that one of the most important issues in dealing with anything is communication.  Sometimes that self-searching begins with discussions with those you trust and understand because they are dealing with the same ‘life’ as you are and may have achieved better results.

However this all works, it works for this group of dads and it works extremely well.  The specifics will remain with them and their actual location will remain theirs.  Another major point is that whatever is needed to deal with diabetes, it takes a lot of work to make it happen.  In the lives of these dads, diabetes was just not acceptable and they needed a place to learn from each other…..and they created such a place……and THAT is a really good thing.  Perhaps we all can learn that something important, something needed, should be sought until found.  These men surely did.

Take a bow dads, I envy your fellowship and you are diabetesdad’s TGIF.

I am a diabtesdad.

Diabetesdad’s Sunday dHero—-a Young Man Who is Focused on Helping Others.

 

The first thing that strikes you about this incredible young man, when you meet him, is his friendly smile and laid back attitude.  He has a kind word for you and will always ask how you, or a member of your family, are doing. 

He is Diabetesdad’s Sunday dHero not just because of the thousands of dollars he has raised for the Diabetes Research Institute, not just because of his advocacy for the JDRF, nor even his attendance at the ADA’s call to congress and his dedication on meeting elected officials until there is a cure; all commendable efforts by this one man.

But, no, that’s not why he is Sunday’s dHero.

And it is not because he is going into nursing and will probably, at some point, find himself working with those with diabetes.  This also is an incredible undertaking for a young person with a very active I life.

But when you put this all together, and add to it his compassion for others, and watch him in action dealing with young people.  Well, you have one incredible young man.  I watched him at the last Friends for Life Conference with the Children with Diabetes and his dedication to those kids he was assigned in the CWD program where he served, was extremely commendable.

He got right in there with the kids and they gravitated to him like the Pied Piper.   He not only spent an incredible amount of time, but his giving spirit was evident with each passing moment.  THAT is a gift.

He is Jesse Nagel and there is not a time that I have seen him that he has not given me a warm handshake, a hug, and asks me eye-to-eye, “Hey, how’s Rob doing?  If ever you need me to call him, let me know.”

It’s that compassion he brings to everything he does that makes him, Diabetesdad’s Sunday dHero.  Take a bow Jesse, and thank you for ALL you do.

 

Do you know someone who can be a Sunday dHero—-let me know who it is and why they should be considered for a future Sunday dHero.

Wanted: Santa’s Elves—-Don’t do Nothing

This is a pet project of mine.

Last year I ran a fund raising event that was fun and worth while.  I sent personal letters to children, from Santa Claus.

Parents would make a donation to the DRI and we would send a letter from Santa Claus; complete with stamp from the North Pole.

Kids with diabetes; kids without; siblings to kids with diabetes, parents sent me the personal information and they absolutely loved when their kids opened the letters personally addressed to them that talked about their personal lives.

“My daughter’s face was priceless; Thank you, Thank you, Thank you.”  ‘M’ from California.

This year I’m looking to grow this program and I am looking for Santa’s helpers to help write the letters.  We will supply you with everything you need.  Letterhead, example letters, stamps for the envelope and even the postage stamps.  You do not have to collect money at all—just help write letters which will be letters printed from your computer. 

So this holiday season, help find a cure AND make the holidays happy with a letter from Santa.  If you are interested; just hit reply to this post and someone will get back to you about the program.  Your ‘reply’ will not show up anywhere as I have to approve them before they are public.  I will use it to see your information and I will get back to you.

It is simple and fun—-get involved—do something.

Thank you,

I’m a diabetes dad.