‘Rents about talks multiple diabetes diagnosis and Friends For Life with
by Bennet Dunlap, October 8, 2012
Lorraine and I talked with good friend and fellow d – dad Mark Fox about multiple diagnosis, stress, anger and letting go. Along the way we chatted about Friends For Life, helping (letting) kids become independent, trust, letting go and who is the primary care giver to a T1d household.
Before talking with Mark we did a little news, starting off with the days big announcement – the Dexcom G4. Lorraine shared she had already ordered one and we look forward to her insights after it arrives. By now there is a ton of coverage of it in the DOC. Remember, Your Diabetes May Vary so consult your care team to consider if sensing makes sense for your family.
In other news I mentioned the FDA (anyone surprised by that?) and Loraine mentioned the Big Blue Test is starting on October 14th and runs to November 14.
Mark is a DOC kinda guy, as in Diabetes Offline Community. It was our pleasure to introduce him to some new online friends. He told the story of the diagnosis of their youngest on NewYears Day nine years ago. She was 6 about to be 7. They like many of us stumbled not fully appreciating T1D. That stumble was driving across country before seeking treatment.
After appropriate chastising and training from the medical team back home the Fox family very quickly made a significant choice. They chose not to tell their daughter ‘no, you can’t do something’ because of diabetes. A case in point being they figured out how to let her go to a planned overnight just days after diagnosis.
They were supported in the fog of diagnosis by a local T1D family. It was this family that mentioned Children with Diabetes Friends For Life. So just a half year after diagnosis the Foxes attended their first conference and have been regulars ever since. It was at that first conference that Mark said that he was with the right people when Jeff Hitchcock spoke about not letting diabetes control your family’s life.
Two years later Mark and I met at another FFL convention. We were in a focus group session on a device that would transmit BG numbers and discussing who in a primary care team would benefit from medical date transmission. Most folks were talking about doctors and DCE when Mark simply said, “My wife and I are our daughter primary care givers.” Good stuff. In the same session another d-dad said that electronically looking over his daughter shoulder with such a device would be an intrusion on the trust relationship he had with his teen daughter. More good stuff.
Mark said that trusting and to letting go to give his kids diabetes independence is the hardest part of parenting. I know I leaded a lot in this session form other d-dads. As an aside I want to mention that I think dads have an important role in our kids lives, with or without diabetes. Those of us who have kids with diabetes have a D Dads Facebook group and any of you other d – dads are welcome to reach out and join us.
I think that about the time Mark recored this for theBetes:NOW:
His needle phobic middle daughter agreed to participate with Trial Net. That screening qualified her as a candidate for additional testing. Before that follow up could be arranged she was diagnosed with T1D. Mark recounted reaching out to two people then, Laura Billetdeaux and myself. I did not know that. I am most flattered by the trust and company.
Mark spoke openly about his anger at the second diagnosis. He was not particularly receptive to well meaning but unfortunate comments such as, ‘if anyone can do this you guys can.’ I think only a T1D parent knows the reality of a diagnosis and the reality is nobody should have to do this and nobody get that more than a T1d family. Mark mentioned that I had sent a DVD that was the inspiration of this series on YDMV. For me diagnosis, particularly the second was about the deluge of knowing the reality of T1D.
I know that I came out of my struggle with a second diagnosis only with the empathy of friends. People who understood the suffering and did not offer a trite solution. I know he and you in the community gave that to me freely when I was in need. I am proud to have offered that to him as well.
That empathy is what makes us a community, online and off.