I haven't blogged in awhile. I mean a looonnngg while. I've been crazy busy. With Jessica getting older, I have grown hesitant to share too many details of her life. But, mainly I haven't needed to. And, that is HUGE. I started this blog as a place to dump all of the emotions I felt with a newly diagnosed child. There are still bad days. There are still many sleepless nights followed by long days at work. There are failed and painful sites, insulin that goes bad, numbers that won't go down (or up) despite us doing what should work. There are added in tween additions such as eye rolls. But, overall everything is ok. It is ok. We are ok. This is our normal. Diabetes, although still a part of every single day, has been more on the back-burner.
The biggest reason it is ok is our support. We had another terrific conference at Children With Diabetes in July. Jessica shared that is is the only week she can truly relax without worrying who sees her site, or who finds out she has diabetes. She is normal there. And, normal to a 12 year old is priceless. But, as opposed to last year where that sense of support ended for her the day we left the conference, this year she is staying in touch with her friends via instagram, facetime, and texting. It has made a crucial difference. As a parent, it makes me tear with happiness to know she has this.
Sean has it too. His entire face lights up when he tells me he has heard from one of his adult with Type 1 friends. He is connected. He is supported. He is not alone.
And, that makes all of the site changes, highs, lows so much better. Because, we are not alone.
But, I want every patient to feel this way.
I have the huge privilege of teaching medical students. This week during one of the classes they were to think of ways a diagnosis of Type 1 might affect patients, and what they could do to make that better. I went from group to group listening to their discussions. "Well, can they get a pump? If they get a pump then it will be easy." "How old are they? If they are an adult then it is probably easier." "I would tell them they just need to take their insulin and check their blood sugars and they will be controlled." I cringed. And, then I reflected. They are students. Most are fortunate to have never experienced a chronic disease. They have absolutely no idea what it is like to live with one. How can they possibly imagine? How can they truly offer support? And, even as they become physicians, will they gain enough experience to understand? I take pride in always having been an empathetic medical student and physician. My heart would bleed for patients. But, until I walked this walk, did I truly understand? Of course not. And, do I understand what this experience is like for each unique individual living with Type 1? I do not.
Those living with Type 1 need each other. There is so much physicians offer, but there is so much they simply cannot offer. I have seen firsthand, that the diabetes community can offer that which as a specialty medicine cannot. We know the truth. It is not easy with the pump. It is not easier for adults. It is not easy for anyone. It cannot be "controlled"...only managed.
That does not mean as educators, we should not keep trying. I showed the students blogposts during class. I watched them as they read the excellent CandyHearts post "She Tried."
Did it make a difference? I don't know. I'd like to think it did.
They are amazing students. They mean well. They want to help. They cannot be blamed for their lack of knowledge or experience.
We can do better as educators. And, I see huge positive changes. This year the first year students are serving as patient navigators. They will be paired with a patient and attend all their appointments with them, and truly get to know them. This can only help.
I wish for every patient what we have found. An amazing healthcare provider for Jess, and a community for her and Sean that sustains them. Because, it is this that lessens the burden, and allows at times for diabetes to live on the back-burner.