Wherever You Go, There You Are

Hi my name is Tina and I have been a Dmom for over 7 years. My last cry was Saturday.

Diabetes meet-ups are wonderful. While I have never been part of a 12 step program I have seen meetings in movies. I imagine those who attend such meetings feel a similar longing for understanding and acceptance and hopefully find a sense of calm in attending a meeting.

Monday evening I (along with some other fabulous parents of children with diabetes) arranged a meet-up for kids attending a diabetes camp this July. The turn out was good, about a dozen families came with their cwd and siblings. The kids played in the arcade as parents visited. It was great when the director of the camp and a counselor came to say hi and answer questions – totally unexpected as this was an unofficial meet-up and not camp sponsored. Having camp staff available to answer questions for first time parents was a real treat. The kids met other kids attending camp and that will hopefully make camp a little less intimidating day one.

A couple of hours after the meet-up I met up with two friends. One of whom also attended the camp meet-up. She isn’t as accustomed to diabetes meet-ups so when she said it kind of felt like going into a support group I could completely empathize. I remember all too well those first few diabetes meet-ups I attended and in truth they do often begin with what sounds like a support group introduction.

Name, age of cwd, and how long in the diabetes club.

It’s common for the nuts and bolts of diabetes to be discussed – what kind of insulin pump, CGMs, 504 accommodations, even the dreaded A1C (hopefully with no judgments from anyone at the meeting). Then if given the opportunity the conversations dip into the emotional side of diabetes; fears, perceived failures, difficult family and friends, hormonal teens, and the roller coaster crazy that is life with diabetes.

This last meet-up was short – two hours total. I don’t know that any of those in attendance got to the emotional side. It wasn’t really the right venue for the emotional stuff, it was loud and chaotic but hopefully also a little informative and really was for the kids more than the parents and I’m fairly certain connections were made. I know Sugarboy met another 5th grade boy who was painfully shy with adults but living it up with my boy and another 5th grade girl. They have hopes of being in the same cabin at camp.

Many families with diabetes never attend a diabetes camp, don’t attend conferences and don’t participate in organized activities. They get their diagnosis and continue on with life with diabetes riding in the side car. There is nothing wrong with this lifestyle. I have many adult friends with diabetes where this was the norm when they were diagnosed 20, 30, 40 years ago. I have these friends because at some point they found their way to the diabetes online community. They found other PWD online. They connected, and some, for the first time after 20 or more years with diabetes realized they really were not alone; there are others around that fight highs and lows, ignorance and even discrimination. As well as others that worry about complications or deal with complications. There is something so powerful in finding out you’re not alone. It is empowering. At the same time knowing you’re not alone doesn’t mean you have to be as involved in the diabetes world as others.

As a parent of three children with diabetes my hope for my kids is they find a place they are most comfortable. Maybe that place will be up front and center in the diabetes world. Maybe that place will be two different worlds – one with friends and co-workers with fully functional pancreases and another with other PWD. Or maybe that place will be one where diabetes rides in a side car and isn’t given any more attention than necessary to stay alive and thrive. Every PWD and CWD is different and just as insulin doses vary so does the desire for other people with diabetes in their lives.

My hope for all my diabetes family, which includes all people and kids with diabetes regardless of type of diabetes is that they find a sense of calm and belonging in their lives with as much or as little diabetes as they are comfortable with.

If you are not currently connected to a diabetes community but would like to connect in others IRL (in real life) or online I recommend the following:

  • Contact your local JDRF office and ask if they are aware of any meet-ups or groups in the area
  • Ask your child’s endo about local groups
  • On Twitter search the hastags: #diabetes #DOC #DSMA
  • Check out the Children With Diabetes forums – there are many different forums basically anything you can think of regarding all things diabetes has a forum
  • Check out TuDiabetes – by the Diabetes Hands Foundation – again regardless of type there is something for everyone
  • Consider attending conferences in your area or beyond. There are too many for me to list so I suggest doing a search for ‘diabetes conferences in (your area – list closest major cities)’  My favorite conference is in Orlando each July. It is the Children with Diabetes Friends for Life conference – although don’t let the name fool you – they have an adult with diabetes track as well

(Just a side note – while most everyone in the online community is there to support and be supported there are a few that trickle in that either don’t actually have diabetes or any connection to it that simply like to troll. Thus when entering the online community be weary and take the advice you give your kids when online – don’t share too much personal information like address, full names of family members, etc.)

‘Wherever you go, there you are.’ Is a quote and book by Jon Kabat-Zinn. Jon is a professor of medicine and teaches mindfulness, meditation and stress reduction.

Thank You

Feeling Thankful Today

I know it is day 4 of the Diabetes Blog Week and I will get to my fantasy device post soon – I promise.

But first….

I have been crazy busy for the past 3 weeks trying to pull my house together and get it “show” ready so it can be put on the market. Not an easy feat for a uberdisorganized gal.

When we sold our last home my kids were 4 & 2 and my third was due to arrive in about 6 weeks. Our house was 1700sqft with 3 bedrooms, 2 bathrooms and no extra rooms. It took me a month to organize, clear out, clean and touch up our home to make it market ready.

Our current home is 3600sqft 5 bedrooms, 3 bathrooms, office, game room, and formal dining room. My kids are now 12, 10 and 8 and have all the junk that goes with spoiled kids those ages. My kids are also attending school and it is the end of the year and everyone is demanding my time and energy. Not even mentioning the diabetes crud (well I mentioned it but I’m not going to highlight all the time, energy, and clutter it takes up). Also – hubby isn’t here – he is already in CA working so I am flying solo. – Oh and I am supposed to be house hunting online as well as finding, scanning and faxing or emailing documents hubby needs to purchase a new home.

I am NOT whining. I know we are blessed and this is a great adventure for us. The hard work is worth the new experiences we will enjoy. It is just all time consuming and I have found little time for myself these last few weeks – including time to browse twitter and blogs. I even missed DSMA live cant last night – still sad about that.

So this morning while drinking my 5th cup of coffee (don’t judge – recent studies show people who drink coffee live longer) I browsed twitter and caught up on some of my favorite blogs as well as a few new ones thanks to the Diabetes Blog Week List. It felt good to be among so many that I feel connected to even if Ive never interacted with them.  While browsing twitter I began thinking about  my first days on twitter. I was a newbie – virgin tweeter if you will. But I didn’t feel new for long. There were a handful (really more like an armful) of folks who welcomed me and made me feel like part of something great.

So this morning I want to thank those individuals who followed me before they really knew me – and continue to follow me despite that they now know me.

  • Kerri @sixuntilme – you are a blog goddess and all around fabulous person. You inspire, educated, entertain and support like no other.
  • Cherise @sweetercherise & @diabetessocialmed – you keep us in line, keep us united and keep us real – it helps that you are funny as all hell and offer endless encouragement.
  • Kelly @kellyrawlings – your support and advocacy are wonderful and you sent me my favorite mug – 😉
  • Marie @cellobard – there are not enough kind words in the English language for me to describe how much I care for you and your wonderful music – a few would be: brave, honest, kind, loving, inspiring, friend, and true.
  • Lea @luvleamum – first Dmama that I found and found me back on twitter – you make me smile
  • Tim @bleedingfinger – Ddad – you are just awesome
  • Penny @p_spore – you love Reese’s Peanut Butter Cups as much as me – that’s enough to make me like you lots – helps that you make me giggle too
  • Shannon @Shanmarengo – you are an amazing mom, friend, pwd, and fellow Texan – I am grateful for all your support and blog comments
  • Brian @bosh – you make me lol and you are the ultimate draw something Picasso (sorry I haven’t played in so long)
  • Jeff @betespora – you always find time to comment on my tweets and your encouragement as a pwd to me (a mom of cwd) makes me feel like I am doing something right
  • Sara @saraknic – you make me laugh
There are many many many more fantastically wonderful amazing pwd and parents of cwd that I follow & follow me back who provide me with hours of entertainment on twitter and in their blogs. My list could continue for pages if I listed everyone and how you all make my life more enjoyable and simply better.
Thank you DOC – all of you.

Guest Post

Woo Hoo first Guest Post – Cassie Giesberg.

You may recall another of Cassie’s guest posts on Sugar’s the Bitch not me – if not go there now and check it out – I’ll wait.

So here’s the deal. I started this blog first to clear my head. Siphon my thoughts into a pensieve – as Dumbledore would say (see I Write Because from 4/4/12).  It has helped me a great deal to share my thoughts, concerns, successes and stories. What has helped more is how I’ve become so connected in the Diabetes Online Community via Twitter. I have met (both in person and online) some of the most fabulous people in the DOC. In the last 5 years since SugarBoys diagnosis I have come to realize that people with diabetes and parents with diabetes really and truly are sweeter (yes it’s a pun – but it is true.) One of those dfabulous people I have met is Cassie Giesberg, CDE (certified diabetes educator) extraordinaire. My children have had the fortunate luck to be seen by dear Cassie. I trust everything she says and so as a parent of 2 children with diabetes I asked her to write a guest post with advice to parents of children with diabetes. I am grateful she has provided so much valuable information that I can share with you.

Hi there! I’m Cassie Giesberg, and I’ve been a member of the T1 club for almost 29 years; I was diagnosed with Type 1 Diabetes when I was 17 months old. Essentially, I don’t remember notbeing diabetic.  However, I do remember what it was like to grow up with diabetes. Depending on who you ask, my experience probably wasn’t that different from anyone else’s. However—because we diabetics don’t come with an owner’s manual—I wanted to share parts of my experience so that you can have an understanding of what it’s like to live with diabetes as a child. Hopefully, my experience will give you some ideas on how to be successful in helping your child with diabetes be a confident, independent adult with diabetes.
Like I said, I practically grew up with diabetes. What that meant for me was that my mom was responsible for my care for a really long time. With that being said, I think that she finally got to a point where was tired—particularly when she was so afraid of my diabetes and what that could mean for me in the first place. When I was ten years old, my mom sent me to diabetes camp. Right before I went, she said to me, “I can’t wait until you come back from camp. Then, this diabetes is all yours”
I’m sure that sounds appalling to most of you. But it’s a statement I’ve heard so many times in my career as a certified diabetes educator. Think about it: diabetes is a full-time job, except there’s no vacation or weekends off. That would be tiring for anyone. Remember that, because it’s going to come up again later.
I really should point out that my mother did the best she could with what she knew and what she had. She was a single parent on a below-poverty income, paying for all my diabetes supplies out-of-pocket; she never let me go without, often making sacrifices so that I would have what I needed. I hope that you’re realizing that she did a lot of things right. And believe it or not, you probably are, too.
I did want to offer up a list of dos and don’ts based on my experience. You will probably have your own to add, and that’s fine, too.
·         Doremember that diabetes—like many other things in life—is a marathon. If you were running a marathon, would you run as hard and fast as you can in order to win? Of course not! You would sprint and pace yourself so that you can successfully finish. With diabetes, you have to remember to take everything one step at a time, one day at a time. If you spend your time trying to prevent every worst-case-scenario, you’re going to wear yourself out pretty quickly. If you take your time, chances are very good those worst-case scenarios will never happen. That brings me to my next point.
·         Doremember that EVERYTHING IN DIABETES IS FIXABLE!!! If you see a high blood sugar, treat it with insulin per your doctor’s recommendations. You are going to see high and low blood sugars from time to time—if you didn’t, your child wouldn’t have diabetes. If you see a low blood sugar, treat it using the Rule of 15. If you treat these things in a timely manner, you can prevent those scenarios that you may be afraid of, as well as complications.
·         Do help your child feel as normal as possible. For me, that was a little easier because I thought that was the way things were. In one example from my own experience, my mom did help me by talking to my teachers at school and convincing them to let me talk to my classmates about diabetes and what that meant; I also showed them what taking a blood sugar and a shot (using a doll) looked like. From kindergarten all the way through middle school, my class learned about my diabetes and what to look for to remind me to go to the nurse. They grew up with diabetes just like I did, and didn’t treat me at all like a “freak”. I was just one of their friends who did everything they did, but sometimes had to do some extra things.
·         Do help your child become as independent as possible. There isn’t a “set” age for when this should happen, but when your child expresses interest in doing diabetes care, let them do what they are capable of, stepping in when necessary (i.e.: manipulation of equipment, skill/technique). Don’t be afraid to observe, and resume care if necessary (see below).
·         Do send your child to diabetes camp if you have the opportunity. Even though I wasn’t treated any differently, I knew that I was the only kid in my school that had to take shots and poke her fingers. Going to diabetes camp meant the world to me—and it opened up a new world for me. At meal times, we all had to test our blood sugars and take our shots. In fact, I learned to give my shots all by myself at camp. We all had our snacks and meals at the same time. However, we had a lot of fun, too. In fact, I had so much fun and learned so much about diabetes, that I had decided at camp that I wanted to be a diabetes educator when I grew up. I went home with a new sense of confidence and independence that I had never had before.
·         Do allow your child to grieve their diabetes. Being diagnosed with a chronic condition feels like a loss—a loss of security, independence, and even confidence. Allow your child time to grieve this; it’s a lot healthier if they do. Remember that it’s what you do next that counts. If your child decides to “give up”, then step in to help them do their diabetes care so that they know life goes on and that they have a teammate.
·         Don’t allow the blood sugar or a1c to be a direct judgment of you or your child. Remember that these numbers are a snapshot in time, and whatever they are, they can be fixed if they’re not ideal. Don’t look at these numbers as “good” or “bad”. Think of them as “in range” or “out of range”. Sure, you want that three-month average to be 7 or below (barring too many low blood sugars), but that can easily be done if you fix those out-of-range blood sugars in real time. If you constantly remind them of how “bad” their numbers are, that will set them up for failure. Your kids don’t want to disappoint you and if you remind them how much they are, chances are very good that they’ll stop being honest with you about their numbers just so they don’t disappoint you.
·         Don’t constantly remind them of what they can’t have or do. Diabetic kids already feel like there are a lot of things that they can’t do or have. In reality, there isn’t anything they can’t reasonably do or have. You and your child will be a lot more successful if you remind them of what they can do or have so that they won’t feel any more ostracized than they probably already do.
·         Don’t be afraid to punish your child if they are independent with their diabetes care, and they don’t do it. All too often, I hear, “But I don’t want to punish them for having diabetes.” You’re not. If you told your child to clean their room and they didn’t, what would you do? You would punish them. This is the same thing—except the stakes are a lot higher.
·         Don’t be afraid to step in and resume diabetes care if your child isn’t doing it. If they’re not doing their care, then they’re showing you that they can’t handle it. Remember, diabetes is a full-time job without weekends off or vacations. The best thing you can do is to give your child a “vacation”. Step in and help with their care. It will be good for you, too, because it will help you keep your skills up in case you have to do all the care for whatever reason.
·         Don’t be afraid to send your child to counseling if they are having trouble dealing with their diagnosis. People with chronic conditions have a 95% chance of developing depression. Kids aren’t programmed knowing how to deal with that, and professional assistance can only help by arming them—and you—with the tools to deal with this as it arises. Your child will be a lot more successful if they develop healthy coping mechanisms.
So there you have it. These are the main things I have dealt with in either my personal or professional life. As I said before, you’re more than welcome to add your own, because I guarantee you that I haven’t covered everything. Some of these may be hard to swallow, and they may not work for everyone, but that’s okay. However, I hope that hearing it from someone who grew up with diabetes make these things a little more valid for you.  Good luck and good health!