April 7, 2010

Parental Discretion Advised

The DOC has had a few rounds of the very worst news this spring. News of young members of the type 1 community passing away. These makes it all too clear, diabetes has complications. This is tragic news touches all of us who hear it.

Children with Diabetes hosted a chat with Joe Solowiejczyk last week. It was an oppertunity for parents to think about how to talk to their T1 kids about this tragic news. On that chat was one of my good friends Kelly Kunik, Queen of Diabetesaliciousness

After the chat, I sought out Kelly. Bear with me a second and I will explain why.

When our first child was born I looked around at my peers. Who exhibited the kinds of behaviors that I would like to see in my child when she became an adult? I then went and asked their parents what were the things they thought made for successful parenting. Here is a little YDMV tip: If your really want to flatter someone, ask them how they raised great kids.

The point was asking people I admire to share their experience to guide my actions as a parent.

This brings me to Kelly who I admire greatly. Kelly not only has type 1, some years ago she the horrific experience of a sibling passing away from complications of type 1.

Who better to learn from? I am honored by the trust and friendship she shows in sharing. Here are my  questions and the lovely K2’s pearls of wisdom.

YDMV: Kelly thanks for sharing. Before anything else can you tell a story that introduces you sister to us as a unique individual?

K2: WOW B, thanks for the kind words!  Are you sure your talking about me?!

YDMV: Yeah Kelley I’m sure. Everyone else will be too very soon.
(But folks you may need a Kleenex - make it a pack.)

K2: My sister Debbie was unique.  

She was diagnosed with type 1 in the late 60's, before I came to be - in the diabetes dark ages. Urine testing and restrictive diets were the norm, everything was off limits. She was a Hippie and a wild child.
 
She wanted to be like everyone else growing up in the late 60's and early 70's -wanting to experience and experiment. She could be impish and funny, and like any sibling, she could be a major pain. But she was my older sister and I loved her. She taught me how to ride a two wheeler and would take me to the beach in the winter and teach me the names of all the different shells.
 
Debbie had problems, some diabetes related, many not. I think her biggest problem was that she tried so hard to be what she wasn't (she hated being a person with diabetes and she hated diabetes, & had issues with being the middle child,etc) that she never could fully relish in the wonderfulness of who and what she was.

YDMV: In chat the other night there was conversation about how to approch with kids about type 1 and mortality. You said with, “Honesty and knowing that you won't be judged is big when your a teen, especially if your a teen with diabetes.” Can you elaborate on that a little?

K2: Being honest with any teen re: mortality is important, because teens believe they are immortal. As you pointed out in the chat room- "Being an adolescent is hard and they need to think they are immortal to survive it". True words were never spoken my friend! If you can say to your child: "Hey, your my life, and as a parent, I'm going to worry about you- diabetes or not. I'm afraid of losing you."

Ask your kids "How can we deal with this together?"  Seek out their advice on dealing with death. Let them know your there for them. 


YDMV: You spoke about kids with diabetes having old souls can you explain how you see that impacting our conversations with kids on this difficult topic?

K2: Actually Joe S is the person who initially said that statement and I agreed with him 100%!  I truly believe CWD (or children with any chronic illness) have old souls because they are REQUIRED to deal with a disease at a very young age. They learn empathy VERY quickly. Children with diabetes are also VERY intuitive to others emotions and reactions and they learn and understand what it's like to be different. Empathy understanding, & intuitiveness are gifts and we take those gifts with us into adulthood.

YDMV: Another line of the chat conversation was the impact of news like this on teens who are rebelling poor diabetes care. In summary people were asking if the news would help scare kids to better compliance. What are your thoughts about fear (and if you are game how did you feel about your own diabetes after you sisters passing but that may be crossing a line - your call.)

K2: My whole young adult life I was told to learn from Debbie's mistakes. My parents told me, my Dr's, my friends parents, EVERYONE. I gotta be honest B, I didn't buy it- I didn't believe it could happen to me. I saw my sisters struggles with alcohol ( she was in recovery the last 8 yrs of her life) and I thought: I'm not going to be an alcoholic, I won't have those issues."

It wasn't until I was in my mid 20's that I realized that diabetes caused her death, not her addictions.   I grew up in a diabetes pressure cooker, I wanted to be normal - just like Debbie did. The difference is, she wanted so badly to be normal, that it stirred up other issues. I was very lucky that I learned that everyone had a different view of what normal was- diabetes or not. I always was very comfortable with being "the kid" with diabetes in my grade, middle,  & high school. I was uncomfortable with other things, like looking like the geek I was.
 
I was lucky that my parents said "Hey life with diabetes is your normal. It's not going anywhere- you have to learn to work with it." My father was a type 1. So is my oldest sister Donna and her son Brendan.
 
My dad told me when I was diagnosed that I needed to work WITH diabetes if I wanted to live an independent life. And I was fortunate that my parents let me actively participate in my disease. I got to pick if I wanted to have a potato or rice at dinner time, I learned to inject a month after I came home from the hospital and refused to let anyone else do it. I was proud of myself for being able to inject- and I secretly got a kick out of amazing my friends!  I learned to test my urine- and that really worked for me...for a time. But  Bennet, I made lots of mistakes as a preteen. I lied about my numbers, starting in the 6th grade- because I saw how sad,scared, and upset my parents got when my numbers were high.
 
The whole intuitive thing came to play re: fudging my numbers.
 
I knew my diabetes was causing pain for my parents and I felt they were under so much stress with diabetes due to my sister- so I fudged.  CWDs see the look of pain on our parents faces - and I have to tell you Bennet- It breaks our hearts to see our disease cause our parents so much anguish.  

Do I wish I hadn't lied? YES I DO, OF COURSE.  But I wanted to make them happy - I wanted to make everything all better. My mom told me years later that she wasn't mad at me, she was mad at diabetes and she felt terrible that in trying to be so good and perfect and protective, I felt I had to lie.
YDMV: What did your parents do right for you after your sister’s passing.

K2: B- My families world almost collapsed  when my sister passed away. You couldn't write what happened to us. My sister died on Tuesday morning. The Thursday before I put my mother in the hospital for going into a-fibrillation and that Friday I put my sister in another hospital (where she went for  dialysis 3 times a week) because she was sick and I couldn't take care of her by myself - I was in college- I was afraid.

My father was away in San Fransico for work and couldn't get a flight home until Saturday night. We were called to the emergency room at 2 am Sunday morning and the Dr's told that my sisters lungs were filling up with fluid. It was horrific. My sister was dying in one hospital and my mother was having major heart problems in another. Tuesday morning as my dad was about to follow my mothers ambulance to Philadelphia, the ER got a call and found him in the ambulance bay. They told him his daughter had died at the the other hospital- 10 miles away.  I came home from the first day of winter semester to about 15 messages on my answering machine that told me nothing- and everything.
 
I didn't know if my sister or my mom had died.  We couldn't tell my mom that my sister died because she was having heart surgery. SHe didn't find out for 5 weeks and missed Debbie's funeral. We all were shell shocked by the turn of events. We all just dealt with the shit storm anyway we could.  We went through the motions of life. I wish I'd seen a therapist- I wish we all had. But we were just trying to get through one hurdle after another.  

My parents taught (and showed me) during this time, that terrible things happen in life, but we have to keep going because the world refuses to stop because our  heart is broken.
YDMV: Yet your writing has a clear joie de vivre - what part of that is Debbie?

K2: I'm not really sure. There are certainly elements of my sister in me. She loved to laugh, everyone in my family has a (most say sick) sense of humor. For a long time after her death I was afraid that what happened to her could happen to me. But I moved past that fear - thankfully.
 
Sometimes I think I live for us both. I wish she'd had the opportunity to experience the great support system PWD have today.   I wish she could have experienced the diabetes freedoms that we take for granted now. There's a lot of things I wish.
 
When I think about Debbie, I think about the good and the bad- and learn from those memories. But mostly I try and think about her  laughing, because when she laughed, I loved her the most.
YDMV: You get seven words to sum up (As if "When She Laughed, I Loved Her Most" isn't already  perfect.)

K2: Everyone has "issues." OWN YOURS. Learn & Laugh often!
Yeah- that's more than 7 words- but I think you'll be OK with that ;)

9 comments:

Penny said...

Oh thank you Bennet and thank YOU Kelly - for being so honest and insightful. I am so sorry for your loss, Kelly.

It's so scary, these kinds of talks with our Type 1 kids. And to be only 7 and have that talk. I am learning, each and every day, from others who have T1, how to best parent G. Thank you both for sharing, it helps.

k2 said...

Honesty is always good- especially with diabetes.
Thanks for asking me to chat Bennet.

Penny: Everything regarding life with D is a learning experience.

kelly k

Colleen said...

Thank you both for taking the time to write about this.

Bennet said...

Penny

I think it is critical to separate what they need to hear from what we need to say.

At seven all they need to know is the first part of Kelly's comment, "Hey, your my life, and as a parent, I'm going to worry about you- diabetes or not."

In fact the worry part may be too much. As K2 say the kids sense that.

We may need to say "I am scared out of my mind." That what the DOC is for.

They don't need our fears, they need our love they need our support they need us to be strong.

Penny said...

Bennet and Kelly,
This DOC has kept me sane (ok, that's debatable, shhh) throughout these past 18 months. There are things I say within it that I don't say to G. As it should be. I agree with you K and B, that our kids sense when we worry too much. And how do I differentiate the line between worrying cause she is my 7 yr old G... and my 7 yr old G with diabetes? The line seems so blurry sometimes, at least to me.

I think my G needs me to be honest. She is a kid who looks for answers. She loves the truth in all its forms. From doses to shots to pump-talk, it's 'Lay it on the line Mama please' out of her mouth. I do tell her that I worry but we will do it together. That we handle it all. That it will be hard sometimes, but we will figure it out. Trying to be honest yet holding back the dam that is complications, dying too soon and having her life interrupted by the big D.

Thanks for a great discussion. I appreciate you all so very very much.

Michael Hoskins said...

Bennet, thanks so much for writing this. Kelly, I've mentioned it before, but thank you for doing what you do. I've mentioned that I have been invited to speak at a children's D-Camp this coming summer - this helps incredibly in knowing how to say what needs to be said. You're right: they need our love and support more than anything, and hearing it from those of us who've grown up with the D can be inspiring. Our work continues.

thisiscaleb said...

Thanks to both Bennet and Kelly. This is a powerful message.

thisiscaleb said...

Thanks to both Bennet and Kelly. This is a powerful message.

Scott K. Johnson said...

What an incredible post. Bennet, thank you for asking the questions, and K2, thank you for sharing so much of yourself. Wow, I'm just in awe (again) of your strength and resilience.