I've Got Your Back

Today is day two of The Fourth Annual Diabetes Blog Week.  Here's the prompt:

Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

Yesterday my blog was critical of the system of endocrinology care at Dallas Children's hospital.  At the end of the post, I mentioned that I'd found some agreement from some parents at a local support organization.  That part of the post has since been removed, because, the leader contacted me privately and asked me to remove the group's name from yesterday's post because it was "negative" and "We don't want any negativity at Type One Family Network."

I immediately, before we ended the call, respected her wishes and removed the group's name from yesterday's blog post, even though what I'd said about the group was that I'd found support there.

I found the Type One Family Network (TOFN) through a friend of a friend.  Unfortunately yesterday after our conversation, I chose to withdraw my membership from the group, because they weren't able to give me the support I thought the group was intended to give.  Apparently, I misunderstood.  The very support I was grateful for yesterday turns out to come with conditions: no complaining.

The first sign that Type One Family Network was not for me came about a week ago.  A thread on the Facebook page had generated close to 60 responses wherein parents were sharing their frustrations with various health care settings, situations and teams. There was a lot of "me too!" and, "I know just how you feel!" Sprinkled in with "Thank goodness I'm not the only one."  As well as a smattering of, "We love our provider, we've received excellent care." This is the precise function of a support group, and it was working.  Then, mysteriously, the group leader piped up and said, "I'm closing this thread. No more comments please."

Huh?

See? Humor!

I have to work at not being negative.  It's not easy for me. I'm just not one of those sunny people I so admire. I admit that, but I make a conscious effort.  I do try to find nice things to say, I look for humor,and when I run into trouble I don't collapse, I look for solutions.  But injustice, and irrational arbitrary policies at hospitals and clinics make me angry. I'm pretty sure that's normal, particularly for Mama bears with sick cubs..

Speaking of Bears, If you read other posts on this blog you will find some warm loving positive energy here too.  Just read the one about our friends raising money for Eleanor to have Jerry the Bear, and how she wants to help other kids get one too - see? all warm and fuzzy! It is my intention to make the post-mix heavy on the sweet stuff and light on the bitter, but sometimes I just gotta get the bitter off my chest. This diabetes stuff is hard.

My daughter's type one diabetes fell into my lap in March.  Finding the right support group was an early attempt at soothing the heartache.  I've joined a handful of forums and groups, but I'm still trying to find my way; navigating new waters, casting about, looking for companionship and respite.  I'm still really new to the DOC.  I need help, comfort, reassurance.

They both have Decoms. Fun.

I wouldn't be surprised if I look back at some of these posts years from now and see my own pain with fresh eyes, and recognize the naïveté, the open wound, the lashing out, the displaced anger. But I'm immersed in it now, and what I need right this minute is knowing someone's got my back.  I don't want to do this alone.  It's scary.  My mom is gone, and I miss her. I'd give my left leg if I could share all this with her.  She'd say the right things, and let me hiccup the same anguished sob into her shoulder again and again, if I needed to, until the tears finally stopped.  Whenever I think of her, it reminds me what an enormous job I have to do with my own three as, Mommy with a capital "M." So, I type it here, and in forums because there's nowhere else to put it. There's nowhere else for it to go.

I was told yesterday that Type One Family Network doesn't want to hear it though.  I suggested that because I shared on my blog that I'd found support from TOFN, it would be a way for others in need to find the group, and know that there is shelter there.  But the group leader said, "I don't want people to find TOFN because they're having problems."  She added that the group gives a standing response to anyone taking issue with a diabetes care provider: take it up with that provider themselves, call the customer service feedback number, but don't bring it here. "We don't want any negativity" She then gave me a list of alternate places where I can complain.  I carefully wrote them down so I'll be sure to do it right next time.  ;-)

So my petition is to the Type One Family Network: please remember that people need support groups precisely because they are struggling.

To my readers: Y'all know of any good support groups? Wanna join me in a new one? I've got your back!