Grieving Over Diabetes………Does it Go Away?

griefI remember hearing the incredible Dr. William Plonosky speak and when discussing diabetes and depression he stated that he would be a bit worried if someone was diagnosed with diabetes AND WAS NOT feeling any depression.  That always stuck with me.  Recently I saw a FB posting about grieving; when grieving should stop over the diagnosis of a child with diabetes.

Grieving.  Depression.  Two very powerful words somehow connected and yet, two completely different types of processing that we faced when our children became diagnosed.

Two things I cannot compare are that number one; I have not been diagnosed with diabetes and surely what I feel as a parent is different from what someone WITH diabetes would feel.  Number two; is the word grieving.  When I think of the word I’m immediately faced with those who lost a child to this disease; they can grieve, what right do I have to grieve?

So I immediately know that there are varying definitions of the grieving process.  Sure we go through some of the levels of grieving; denial, anger, depression, accept (and some add bargaining in there) but as a comparative in my own life,  I would definitely say I went through a ‘level’ of the grieving process.

Jill still said it best when she stated, upon Rob’s diagnosis in 2009, that her anger is at the fact that another (Rob was our second child diagnosed) childhood was stolen.

It became clear to me at that point that we do grieve for what is lost.  But the other side of that realization is that we still have a lot more than what we lost.   It was realizing that point in my life that I started to turn the grieving process around .

As I have touched upon before, I suffered a huge loss of someone when I was younger.  The absolute pain of knowing that that someone would never be coming back was overwhelming.  Leaving the discussion of faith on seeing loved ones again aside for just a moment, the idea of not actually seeing this person again was a hurdle mountain-high in my life to come to grips in understanding.  It was huge.  My faith has my heart in the right place but for ‘the now’, a pain remains 32 years later. 

So for good or bad; I had a comparative in my life on the ‘grieving process’ with diabetes.  The bottom line is that my children are still here.  We experienced the pain of having some of the simple things being taken but it is a huge ‘light-turned-on’ thought process to fully understand what it is like to have diabetes come into your life and what it is to have someone you care deeply about leave forever.  Quite frankly, I would much rather of not had either.

I honestly do not think I ever experienced the denial of Kaitlyn and Rob’s diagnosis.  I knew exactly what we needed to do and that was to ’embrace it’ from the get-go.  There was only one way that diabetes was not going to win in our home and that was with knowledge.  I mean deep-rooted knowledge.  Not the, “I heard from so-and-so” type knowledge

Perhaps it is in my namesake (Thomas, look it up 🙂 ) that gives me doubt, but I have always needed to find out things for myself to fully learn.  I take very little at face value.  If you ask me about the grieving process pertaining to a diabetes diagnosis, I would share that knowledge is the ultimate equalizer.

And even at that understanding life can still be derailed.  Do I still have moments of sadness for the many reasons diabetes is in our children’s lives and can get us down?  Yes.  That aspect does not go away.  And quite frankly, it is a reminder for me that our work is not done.  My diabetes involvement pretty much has me at 24/7 but it pales in comparison to the 24/7 of our children’s experiences actually living with diabetes.  And until we can get rid of that feeling for them; we need to all keep doing what we need to do.

For them, for ourselves, for a cure, for better management, for helping others, for better education, for camps, for advocacy—-because at the end of the day if I can minimize just some of my grieving by trying to move the diabetes dial just one notch for good….it is one notch I have less time for grieving.  I’ll take that any day of the week.

I am a diabetes dad

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

Change-it-up-Monday…..What are YOU Gonna Do?????

MondayIt’s Monday…..what are you doing today?

I know that Monday is everyone’s favorite day of the week but it IS the beginning of a new week to make something happen.  Or are you thinking, “here we go again’ with the same ol’ week doing the same ol’ thing?

We cannot change what we are given, but we can change what we do with it.  Let’s make that choice that we will do something different today.  As big or as little as you think necessary; but let’s change it up.

Do not ask your child the second they come in the door “what their number was”, ask them how their day was instead.
When in line for coffee tell the cashier that you are paying for the next person’s coffee also.
When someone does something at work that is ‘cool’, let them know.
Tell your spouse/partner that you appreciate the fact that they do more for your child’s diabetes and how much it means to you.
Call your parents and let them know how much you appreciated them and all they did.
When people think something is funny at the expense of others….do not fuel the fire.

Too much?

Okay; try smiling at a stranger.
Try holding the door for an extra second or two for someone who is “just outside” two steps from the door.
Try not being on a cell phone while paying for someone and look the store associate in the eyes and say thank you.

Let’s call it, “Change-it-up-Monday”.

Because no change is a big change unless it starts as a small change; and those small changes add up.  Let us know what you did differently today.

Welcome to “Change-it-up Monday”.

I am a diabetes dad.

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


Why Won’t Our Parents be Involved with Our Child’s Diabetes?????

WHY NOTI want to be 100% clear that I’m not judging one way or the other with today’s article.  My answer and what others say; is not your answer, nor should it be.  This is one of the toughest articles I have written but I just felt it needs to be addressed.  Perhaps it might open a discussion and if that happens, and one family feels the need to change and does, we move forward and that is always a good thing.  If it helps you somehow deal with diabetes just a little bit better, that is not such a bad thing either.

(Editor’s note added at 5:15pm EST—when I wrote today’s article, I had no idea that today was National Grandparents Day)

SO I do not have to clarify throughout this article, when I say grandparents I mean your parents, your spouse/partner’s parents, your ‘ex’s’ parents (when you ‘ex’ is the parent of the child in the household with diabetes).

Again I ask you to reply (parents, grandparents, and every thought is welcomed) here as oppose to the FB page where you saw this post so everyone can be part of the comments and can read, and can learn—-let’s do that together.

Our Parents and/or our partner/spouse’s parents and our child’s diabetes?  Grandparents.

That sentence probably had one of two reactions in the pit of your stomach.  One being, “thank God for my parents because they are amazing when it comes to my child with diabetes”.  Or there is a pain that is there because the relationship with your parent is not what it should be, could be, or was before diagnosis became the new normal. 

I have talked to literally hundreds of grandparents in my life about caring for a child with diabetes.  My results are skewed, I admit, because much of these conversations occurred with grandparents while attending a Children with Diabetes Conference.  If a grandparent is attending, they are already looking to become involved. 

One of the first questions to ask yourself is what was the relationship before diagnosis?  If it was strained before, do not all of a sudden think that diagnosis will help; but in some cases I have heard where the relationship changes for the better and I have also heard that diagnosis resulted with grandparents greatly distancing themselves like never before after diagnosis; there are no hard-and-fast rules.

There is a bumper sticker I saw once and it said, “If I knew they would be so much fun, I would have just had grandchildren.”  Many grandparents will laugh at this and smile as they admit, ‘at the end of the day, they (grandchildren) go home.”

That is the ‘once removed’ topic.  Outside of the percentage of grand parents who live with, or care for the grandchildren daily, the kids do in fact ‘go home’.  As I travel and speak to parents, I have heard very sad tales of how grandparents just could not handle diabetes.  I have written and spoke many times that in many instances grandparents are the most ‘forgotten group’ during diagnosis.  They want to help but do not want to be where the parents’ do not want them and that balance is hard to find.

Some dive right in.  Others either do not know where they belong, have no desire, or are scared beyond our wildest notion of what runs through their heads.  Now I’m sure that many ‘a professional’ will tell you that there needs to be a dialogue created to see how this might  all play out.  That dialogue, in some cases. is as much a problem as the problem itself.

If the ‘non involvement’ is due to the possibilities that they may live too far away or the parents HOLD ON to too much of the care and DO NOT allow grandparents involvement (for whatever the reason), is not what this is about and you need to ask yourself if it is and if YOU CAN CHANGE something to make it work, you need to take those steps.

I think it’s important to understand that what we ‘would like’ is not always what it is; and what it is may not be subject to ever change.  If everything that can be done is done to include grandparents and grandparents do not choose to be involved, it is not your fault.

It is not the ‘fault’ of your parents either, it’s their choice.  We may not agree with it, it may infuriate us, and above all it may really hurt us; but if it cannot and will not change, it becomes up to each of us what to do next.  

As if it is not enough to deal with diabetes itself to also have to deal with a parent or family member that is not involved the way we think they should be can really be frustrating; but it comes down to the choice being up to them.  Whether we like it or not.

I also know that we cannot merely ‘justify’ those bad feelings away.  The entire situation can not be resolved by reading anything I can write or jus say ‘that’ will not bother us.  I DO KNOW that you are not alone.  Like the diagnosis of diabetes itself, we all learned that we are not alone, and neither are you in this instance.

I witnessed a FB thread recently and I saw many people try to help.  I also saw that certain situations may also come down to the fact that the situation will just not change no matter what others may suggest.  No one knows like you know.  Coming to grips with that point is up to you.  Just as we worked through the fact that no matter how much we want, no matter how much we were in pain, we came to grips with the fact that a diabetes diagnosis was here to stay.

You were strong enough for that and you are strong enough to handle this.  Just as you worked through focusing on your child and did not compare what you go through or what others go through dealing with a disease; do not compare what other grandparents do or do not do; again focus what YOU NEED to do with your child’s diabetes.

It will take time.  It will still hurt.  It will still anger you.  But if everything you tried to include grandparents in the mix has not worked and that RULES YOU, your child will lose.  No one has been better at avoiding that than you.  

One can only hope that something at some point will ‘turn on the light’ in the grandparents’ life.  Should that happen, be ready to help them help you; if it does not happen know and remember this; you STILL ARE THE BEST THING in your child’s life………some days you need to be reminded that having you may very well be all your child needs. 

I am a diabetes dad.

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

A FREE (I said FREE) Family Getaway Weekend for 15 Families with Diabetes

Camp Pump WearSomething for free?????  There is a catch, right?  Nothing is for free.  Why would someone give a weekend away completely for free?  Can’t be true, can it?

Well here is the world’s best kept secret and you have a shot to take part.   Pump Wear is a company that has been around for a while and it is run by moms.  Moms who understand, moms who care. They have been doing this for six years, and for the seventh year; YOU CAN BE THERE.

Imagine the entire family getting away together for a Mother’s Day 2014 weekend (they plan something special for the moms too) for horseback riding, camp activities, boating, fishing, fun, fun, fun, all for free……you just get there and everything else is done, done, done.

From their website about this incredible program and why they do it.
Our goal has always been to help families enjoy all the wonderful things that childhood has to offer. With the daily stress of living with diabetes we want to be able to provide a haven for families to take a breath and enjoy time with their family and an opportunity to make friends. We understand the high cost of diabetes and the many life changes that occur and wanted to truly support an organization that offers our families the ability to spend 2 nights and 3 days in a beautiful setting with wonderful friends and lots of activities. The Double H Ranch is that place. We would like to offer 15 families the ability to come to this ranch and have fun and make friends.

For a write-up of the event; click here. 

The camp grounds are none other than Paul Newman’s “A Hole in the Wall Camp” in Lake Luzerne, NY.  What an incredible opportunity to get away for a weekend you will never forget.  So if you live too far, send this to a family who lives with T1 Diabetes anywhere in the Northeast—-what an incredible opportunity.

For the application, click here.

What an opportunity…..take advantage; some things are, indeed, completely free.  Thank you Pump Wear, Inc…..just fabulous.

I am a diabetes dad.

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

PART II—PLEASE READ AND SHARE: Child Diagnosed at Death…..Need Your Help……Even if YOUR CHILD was Close.

Let's GoI wrote earlier today about having a good lead to help educate Family Physicians on looking more closely for diagnosis of diabetes before allowing misdiagnosis.

Someone stated that I should not just include Diagnosis at Death….and I fully agree.

If your doctor (no names please) missed the diagnosis of your child’s T1 diabetes when they showed symptoms of the flu or something else….please share your story.

Sent to and in the subject line please write ‘Parent’s Story’.  Including State and pertinent information, share your feeling as well.  PLEASE ONLY SHARE YOUR STORY IF YOU WENT FOR AN INITIAL DOCTOR’S VISIT AND THEY MIS-DIAGNOSED YOUR CHILD AND SENT YOU ON YOUR WAY.  Thank you all….these will add powerful testaments.

Thank you ‘Megan’ so much for chiming in with this idea.

I am a diabetes dad.

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

Child Diagnosed at Death; Thought it was the Flu….Now Let’s do Something about it….Need YOUR Help!!!!

Let's GoI need your help.

I am in discussions with someone who might help educate Family Physicians (Pediatricians would be next) on a fairly large-scale to administer a protocol for (at least) a urine sample when symptoms in any shape or form resemble a possible T1 diabetes diagnosis (whether it be flu, sever back aches etc etc).  At the very least it could/might be an education campaign; our discussions are in the very early stages but my contact is very interested in helping,

What I need from you.

I am trying to collect every media story I can for any child diagnosed with T1 diabetes upon their death.

Please send to and in the subject line please write, “Media”.  Do not assume that it was so popular that I probably received already.  I need to create a case for the person I’m speaking to and I could use your help.  Do not send any stories/links prior to January 1, 2008.

Let;s start to change this once and for all.  No child should die upon diagnosis right after seeing their family doctor.  No Child.

Thank you.

I am a diabetes dad.

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