Chronic Illness as defined by Mosby's dictionary is any disorder that lasts over a long period of time that affects physical, emotional, intellectual, vocational, social or spiritual functioning...
With a definition like the one above, it is mind blowing that we don't often consider long term illness something to grieve. I want to talk about it in relation to diabetes because it's close to my heart.
(This is one month's worth of insulin injections for a type 1 diabetic)
The morning I sat in the ER looking at my oldest living daughter laying almost lifeless in the bed, waiting for test results to arrive, I was consumed by my owns past traumas leaking through into the present moment. I was scared out of my mind and in a place that I work to avoid at all costs... waiting.
The moment had arrived and the test results were here and finally the doctor walked in to give me the news. My daughter was in diabetic ketoacidosis with blood sugars running just shy of 800. If you have no knowledge of the diabetic world I'd like to tell you that the average person non-diabetic blood glucose runs around 100. My daughter in this moment had syrup for blood and she was no longer able to form sentences or keep her eyes open. Her body was working diligently to keep functioning the best it could with some serious limited resources.
My eyes began leaking this salty substance I prefer to not show people, but the tears refused to be controlled. They came anyway as I tried talking the doctor into appendicitis instead of the diagnosis he just shared. Type 1 Diabetes or any diabetes does not run in our family and our girl was an active, fit beautiful blond with a lifetime ahead of her. Our entire future changed with that diagnoses.
My daughter took the news well. She didn't cry (like I had) it was almost a huh moment for her. It could have been that she still wasn't thinking straight, or it could have been because she had never really gotten upset over anything in her life. She spent the weekend in the ICU and went back to with the rest of her class on Monday morning. I questioned her decision in that but allowed her to make her own choices that week because they were the only things she could control in those moments. It took a week before she broke. I have to admit that I was waiting for it. I was waiting for her emotions to come flooding through like a violent hurricane and I was there to hold her as she grieved the loss of her life as she knew it. Now she wasn't dying, she had all her limbs attached and yet here she was with waterfalls of tears running down her face. The rest of her life WE will have to maintain this illness because she is the proud owner of one useless pancreas. A pancreas that gave out through no fault of her own.
Notice what I said before.. WE. Not she, but rather WE. Chronic illness is a family affair. There are days when her independence shines through and she can manage the syringes, insulin and insertion sites all by her self at the age of 12 now 13. There are also days when she quits and is so tired and angry about not being her once "normal" self. She still grieves the loss of what she thought her life would look like even 6 months later. I anticipate we will have moments of grief sporadically forever. Here's the thing, she gets to have these moments. She gets to feel those feelings without us telling her to "cowboy up" it's time to move on. She gets to grieve this because it's the healthy thing to do and because her feelings are real, valid and we honor that. Here's the other thing, chronic illness is a family illness not a her illness.. We don't all have the break down moments, but when she does, we will be there. Some days she gets to rock this thing like a champ and some days she gets to quit, that's when we are there to do the maintenance for her. Some days she doesn't want to talk about it and some days I see her quizzing her 3 and 5 year old sisters on her different devices and insulins. I see her baby sisters asking for the finger pokes to check their blood glucose with her. I see her 12 year old sister watch with eyes to learn and now more knowledge than most adults of what to do in any given situation. I see her father always available to pick up medical supplies and encourage her to learn how to be independent. I am there as support and to cry with her when she wants to cry. To agree that this is stupid when people say ridiculous things to her. I am also there to celebrate her victories and to build her vision so she sees that her story matters, that she is one incredible kid and that she is already impacting so many lives
So yes, she gets to grieve. We will never put a time limit on that. We will never make her push her feelings down and hide them because we think it's time to move on. We will however always be there. Her sisters as her support team, her aunts and uncles who have her devices hooked to their phones so they can also keep an eye on her glucose levels. Her grandparents that always have string cheese and cucumbers on hand because we deem those "free" foods. And us, her parents, there to pick her up when she falls down.
Chronic Illness..... It's a family thing.