Tuesday, April 12, 2011

same and different

While none of us would wish type 1 diabetes on anyone, I am sure we all agree that the friendships we have made because of it are priceless. Being around others that get it is so amazing. To spew numbers and have others not stare at you with a blank look wondering if they should cringe or congratulate is great. The feeling of "same" is so relieving.

Every month, I get together with a few D moms for coffee. Our T1 kids range in age from 4 to 14. Some have been doing this for months, others for years, many years. Some are dealing with starting school, others with starting puberty. We have pumpers who moved back to shots, ones that just started the pump, others who have been on a pump for years, and some not interested in even looking at pumps. Animas, Medtronic, OmniPod, pens, syringes. Doesn't matter...we are the same!!!

We are all doing the best we can for our children. We test, we bolus, we count carbs, we analyze numbers, we worry, we fret, we cry.

We seek out others like us because it makes us feel not so alone. We gather for coffee, we read and write blogs, we comment on forums, we participate in fundraising and networking.

So what about those families that are in denial. The ones that close themselves off and don't reach out to others. They back away from those reaching out to them. They think if they just ignore it, it will go away. What happens to these kids?

Today, I heard a couple stories that broke my heart. A family that puts their 9 year old completely in charge of his diabetes....all the testing, carb counts, shots, etc. That couldn't tell you what his blood sugar is because THEY don't test him. A dad who thinks it will go away and therefore doesn't get involved in anything related to D. A boy who passes out then complains of leg pains all the while taking his bg isn't even on their mind. When throwing up on a car drive due to dka (prior to dx), was told to stop trying to get attention. And these were only a few examples.

THESE are the moms that need the support of other D moms. How do we get to THEM?


  1. I cannot even fathom. I am angry and heartbroken at the same time. To know that there is support, whether in person or on the computer, is so important especially with something as all consuming as D.
    When I'm at a loss, I pray; so that's what I will do...pray that these 'lost' families will find their way to help and support.

  2. I am unsure and wonderful question. I often think of these families too Denise. I do think that persons who take the time to write and read the blogs and the forums and the websites are definitely an "elite" crowd. By "elite" I mean they are the parents of CWDs that are wanting support, understanding, and knowledge...and to support others...the populatin that we are "running" into in our computers does not reflect the population at large.

    I wish I had an answer...

  3. My heart breaks for those kids. Parents who don't take the time to educate themselves on something as serious as D are not going to change anyways. I think all we can do is pray for those children and hope with all our hearts that they find a supportive community when they get older.

  4. I don't get it. I just don't! At our elementary there are 3 kids with T1D and 1 of the other DMama's and I are in the nurse's office CONSTANTLY checking supplies and numbers and just . . . well, being tehre sometimes. The 3rd T1D's mom has never been active or involved in his care. The nurse handles everything at school and I have on more than one occasion offered supplies when he is low. The nurse hints at the fact that poor (insert name) doesn't have much support at home. Really; I just can't wrap my brain around that. I am just not wired that way . . . and neither are ANY of us in the DOC. That's why we run to each other with these stories and weep on one another's 'shoulders' with sadness for the kids who must feel pretty alone.

    I like Reyna's comment about us being elite . . . like elite athlete Mama Pancreases. Maybe we need to reach out to the others and train them up ;)

  5. It breaks my heart. I hear stories, too... And I don't understand it. It makes me hurt for those kids and their futures...

  6. Denial is a scary place to be. I was alone for so many years, it is one of those things that you don't know what you are missing.

    I also wish we could reach out to every single one. That is part of my motivation to keep blogging. If I can reach one family and introduce them to the DOC, then that is a wonderful feeling!

  7. I was thinking the same thing... two weeks ago there was a little boy diagnosed who I heard about through one of my husband's co-workers. I was immediately ready to go visit them in the hospital and arranged for them to get their backpack of hope and made sure that they had all of my contact info, but they didn't want any of it and just wanted to be "left alone to figure everything out". To each their own, for sure and I would never want to cross that line, but I just can't imagine. The DOC has been so helpful to me and I am trying hard to find some people locally who are interested in getting together like you do, but there just doesn't seem to be much interest. I feel like I am the only one who wants to. ?? I'm just going to keep trying. :) So watch out people at walmart who are wearing a JDRF shirt or you or your kid has a pump, because I am gonna come talk to you! Ha!! :)

  8. That just breaks my heart. That is too much for ANYONE to handle alone, let alone a 9 year old child. It is so sad that parents like his don't take it more seriously. I have heard stories like this and I just can't understand it.

    I am SO thankful for such a wonderful support group in the DOC and the one I have here locally. I don't know what I did before I had all this wonderful support.