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.

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Do Our Kids Look Upon Themselves….as Damaged?….Again Seeking Input.

Last night I saw the movie, Love and Other Drugs.  Before you start your car to run to the Redbox outside your local 7-11 or quickly download from Netflix, you need to know that this is a real, raw film.  And you may want to see it before sharing with your older teens due to the sexual nature of the film, which is a tad too bad as there is an extremely crucial message in this film.

I don’t watch films to learn, per se, I go to be entertained.  Anne Hathaway (Maggie) gives a fabulous performance and two things struck me in particular about the film.  One is the drive Anne Hathaway’s character has to live with the disease that afflicts her body, and the other was an actress that has a small role that captures you immediately, Lucy Roucis (I will get back to Lucy in a minute)..

Maggie has Parkinson’s Disease.  She is doing her ‘damnest’ to live her life to the fullest.  Many times I have stated how important it is to ‘LIVE with diabetes’ rather than ‘live with DIABETES’.  Despite everything that Maggie attempts, the one crucial point she cannot get past is to allow anyone to get close to her.   Jamie (exceptionally played by Jake Gyllenhaal) falls for Maggie and she does all she can to keep him away because the way she lives her life is safe.   At the crucial point in the film the conversation went like this:
Maggie Murdock: I’m gonna need you more than you need me.
Jamie Randall: That’s okay.
Maggie Murdock: [crying] No it’s not! It isn’t *fair*! I have places to go!
Jamie Randall: You’ll go there. I just may have to carry you.
Maggie Murdock: …I can’t ask you to do that.
Jamie Randall: You didn’t.

Recently I wrote asking those with T1 Diabetes, who were now adults, to chime in and I have heard from so many how healthy that dialogue was.  So many parents sent me emails and private messages how much they learned from those who live with diabetes every day.  I thank all of you who commented. And now I may ask it again. 

As I watched this film, it was very clear that Maggie was going to do her all in her power to live as she sees fit,  But it was also very clear that she could not get past the fact that someone may actually love her completely because she thought of herself as ‘damaged’ or not as perfect as someone may ever want.  Moments in the film had me saying to myself, “Do our kids feel that way?”  DO they feel that no one would ever want them because they have diabetes?  Do they feel that  THEY do not want anyone to get close to them because they have diabetes?  When they enter into a relationship, what does the family of the new-found love say about their diabetes?

A beautiful actress named Lucy Roucis caught my eye in the film.  Maggie goes to a support group meeting and Lucy’s character is running the evening’s event.  You notice the sparkle in her eye and hear her fabulous wit; it is only after that moment that you also realize she has tremors and has Parkinson’s also.  In my homework for this writing I found out that Lucy has Parkinson’s and what we are seeing is probably a lot like who she is everyday.  She shared that she also wrote part of that wonderful scene.

Lucy states in an interview,
I would like journalists to change the phrase, “suffering from Parkinson’s.” I don’t suffer. I endure Parkinson’s. I live with Parkinson’s. But suffering is a state of mind.

And there you go.  “…suffering is a state of mind.”   How fabulous is Lucy?

In as much as our kids with diabetes do incredibly wonderful things, which I have written about many times, do they—EVEN WHILE DOING these great things, deep down inside, ask themselves, “……will anyone fall in love with me WITH my diabetes?”  Do they, as Maggie did, push people away and not allow people to become close to them, because of their diabetes?  Did they feel that way and had to get over it?  What do they feel?

Do you as parents ever ask yourself these questions?

I look forward to reading what others feel on this subject and again, if you could reply here so everyone can read the responses (as oppose to wherever it is posted on-line) it would be appreciated.

BTW you can click the hyperlink to Lucy’s interview above and see how fabulous and successful a person she is when not onscreen; I do hope her parents are as proud of her as we are of our kids, who also accomplish great things even while ‘enduring’ with diabetes.

I am a Diabetesdad.