It’s taken me forever to return to this blog/post. Life has a way of taking soooo much time, let alone D and the daily routine of maintenance (emotional and otherwise). A few weeks ago I found myself driving to Ellie’s pre-school after she was there for about an hour to address concerns of a HIGH on dexter (Dexcom CGM). I knew that she was going to go high, but I knew it wasn’t over 400 as dexter was indicating. Because I did know that she was running high I was more than ready to receive the phone call to return and address it (the breakfast bolus didn’t do its job). Once there I did a blood test to find her somewhere in the high 200’s. This event made me realize that I needed to do some perspective finding. Over the last few weeks I have been trying to power through the enormity of D. Trying to “get to the other side” of it. The gloom of the last couple of months was beginning to envelop me and my anger was beginning to boil deep inside.
I decided I needed to make an attempt at defining parenting with D for myself. Not just to have perspective, but to end the mental “saga” rolling through my head. As described by all fellow DOCers…D is exhausting, depressing, drama filled, craptastic, sleepless, fear laden, bullshit mostly. But it’s your kid and it’s a part of your kids life, so you try to make it less of the above…not just for their sake, but really for yours as well. It’s like you can’t really complain EVERY day. It’s not really THAT bad EVERYDAY. But the second you pose the question or you try to describe what it’s like…you are instantly dragged back to the reality of D maintenance and the consequences of it all. The enormity of it all in itself is overwhelming.
I finally have been able, without a crap load of guilt, to say: When she was diagnosed, my life ended. Not literally…but that is the best I can do at describing what I feel. I had not yet chosen what her life would be in my eyes. She was only 3. But I had a vision of my life and where I was going and how I was going to conduct my life. That path stopped January 19, 2010. I’m not mad about it really. Not now at least. I’ve quit my job. I’ve dedicated the last year of all free time (and not so free time) to reading, blogging, logging, and learning EVERYTHING I can possibly get ahold of regarding Type 1 Diabetes. I have spent more time over the last year with doctors and more time in labs then in my life cumulatively. Type 1 Diabetes is in almost every single breath I breath. It is the beginning and end to every single decision made in my life. I go to the store, it is a blood check and supply inventory. I take a shower, it is a dexter check and assessment of time away from her and the possibilities of what can happen or not happen while I am in the shower. Meal times are thought of and planned in the context of boluses and basal timing. Bedtime is a decision based on previous experience and possibilities. Bedtime is definitely the most intense part of D for me. It scares me. Leaving her with the few that I can is tense and difficult for all involved. I speak in a serious, sober tone of the last few hours or what has been occurring at that time over the last few days, or what could happen based on what I’ve done before leaving…it’s a big deal for me to leave her. I don’t enjoy being away from her, it is still too hard.
I have literally not “worried” about that childs safety in any other context than D for over a year. Not that she is in harm’s way all the time, but I don’t worry when she runs too hard and may fall, sure I mention it to her to slow down, but I’m not that worried. I don’t worry about whether she is eating a nutritional, well-balanced meal really. I just worry about the carb count and insulin requirements. I don’t worry about her education or progress with letters and numbers…all the things that I believe I would be worried about without D. (Don’t mistake these statements to mean I don’t pay attention to such events! I just don’t worry about them!)
I spend my time as a D parent making sure my kid stays alive. I want her to be alive and well even after I am gone. I do not want her to die from insulin or suffer complications from high blood sugars. Awful as it sounds it’s that simple.
I do not want Ellie to ever have too much insulin and die from a low.
I do not want Ellie to suffer physical harm from high blood sugars.
That simple statement requires me to give up the path I pictured for me and spend the rest of my life ensuring that not only I, but Ellie learn EVERY SINGLE THING we can about Type 1 Diabetes and it’s management. Then we shall together build her path as she grows.
Once I worked it out…it all made sense again.
Yes, my life ended when Ellie was diagnosed, but my new life started. I can’t imagine a better life path then mentoring and observing Elizabeth Lee Fincham grow into a beautiful, smart woman
…who happens to have Type 1 Diabetes.