How To Get Your Life Back After Diagnosis

HardestOne minute everything is routine, the next your world is turned upside down.  You’re in shock, devastated, scrambling to save the life of your child as you watch them get sicker and sicker.

You cling to hope, faith,……you go over the past 2 weeks over and over again in your head while doctor after doctor streams in to save your child.  What did I miss?  I’m a horrible parent, it’s my job to protect my child and I failed.

Before you know it, you’re admitted, as a family, to the hospital for a week-long stay to rectify the mistake you made, the disaster you didn’t catch as the mother.  At least this is what I thought and felt as I watched the doctors and nurses come in and work feverishly to stabilize my son’s levels.

I stepped up, I rallied, but privately I couldn’t forgive myself.  I learned about auto immune diseases and how they work and was assured by all the medical staff that I didn’t do anything wrong.  Yet I couldn’t accept that.

It took me a long time to believe what the experts told me, and it took me an even longer time to forgive myself.

I believe one of the ways I can sit here today, 14 months into my son’s Type 1 Diabetes diagnosis, is I allow myself to be sad.  There are days when everything runs smoothly and I can end the day saying to myself, Type 1 Diabetes isn’t that bad, thankfully it is manageable.  Yet the majority of the time, Type 1 Diabetes isn’t manageable without a LOT if effort and grief.

Being the parent of a Type 1 Diabetic child carries with it, not just the vigilance that Type 1 Diabetes requires, but also the emotional aspect of watching your child carry a weight that you wouldn’t wish upon your worst enemy.

Type 1 Diabetes for the parent of a child afflicted, is emotionally and physically taxing and draining.  It’s also accompanied by anger at why and wondering how this happened to your child.  This is especially true when, as was in my case, you have a completely healthy first-born, and it’s your second born who became ill.

When I had raised both of my children that same, and my son has to live a life filled with night checks, mathematical equations at every meal, and poke after poke in order to survive.

I believe one of the ways I was able to get my life back, in a way, was to allow the grief and the frustration.  I didn’t deny that life most days sucks, I stand in that for a moment, then I pull it together and we forge through the day and make it a success.  Not allowing myself to feel, or allow the normal emotions that anyone in this position would have, would be a disservice to not only myself, but my family as a whole.

We are in a society where everyone expects that we be strong and remain fighters all of the time.  Phrases like, at least it’s not cancer, and, “You’re so lucky there are so many machines and technology to monitor for you” hit me to the core.  Yes, thankfully it is not cancer, however, just because it isn’t doesn’t mean that life for us is any easier.  For us there is no remission, we sit and live this way until there is a cure.  Then, as far as the technology, it certainly can be a help, if it works properly and if you can afford it to begin with.  Yet even with all the technology, there is always double checking.  One doesn’t rely on a continual glucose monitoring system to be its eyes and brain constantly, blindly expecting it to save their child and keep them alive.

So allowing myself to be disappointed at the days outcome of numbers, gives me the ability to remain human in an environment that requires a non human approach.  By that I mean, we are hit daily, multiple times a day with triage situations.  We aren’t really allowed to be tired or miscalculate a carb count for a meal, for those two things carry with them devastating consequences.  We have to be quick thinking, and always on our game.

So all in all, what saved my sanity was that fact that I allow myself to grieve often, and I allow my children to see me work through these feelings, but always pick up and charge to find the solution.  Showing that we are human and chasing perfection isn’t what this disease is all about.

It’s about making mistakes, but having the determination to find the proper solutions in order to survive, figuratively and literally.

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