I am going to post this just once. I am going to allow myself to rant and rave and let out all of the anger, frustration and the deep sadness in my soul.
Sadness that this has happened to our little boy and sadness because I read about all the other children and adults of all ages who have this shitty disease. I am going to do this because I realize that I spend most of my time in survival mode and while I am often near tears, a cool nine months in, at the time of this post, I must be strong and I must try to make diabetes part of our life, not our entire life for our sweet Mac and for Isabella my step-daughter – though most days it seems like it is bigger than us.
I absolutely feel “lucky” that it is T1D, not severe allergies, not cancer or anything else and when we are at the hospital surrounded by so many sick children, I am relieved that he “just” has T1D and not something else.
I well up with tears for all of the families we cross paths with at the hospital and I can only imagine how much they are going through – though I guess I sort of do know because we go through it every day and every night. I am frightened that he is going to go to sleep and not wake up – I had just gotten over the fear of SIDS when this happened so I have not once slept through the night in the 19 months since he was born. I have not yet begun to allow myself to think about all the other possible complications associated with this shitty autoimmune disease that could ravage my beautiful baby boy’s body in the future.
While some days, and some nights, are better than others mostly this disease is relentless and always present and there is no cure.
I HATE TYPE 1 DIABETES and I am tired, like really fucking tired.
I want to scream at the people who say “At least you know what it is” my dear(s) you have no idea what the fuck you are talking about.
We are exhausted pretty much every day. Prior to every meal our son requires a finger prick (I cross my fingers every time) and an injection – both of which require several steps to execute. When he gets sick we know we are in it for the long haul – we have to also check his ketones and his blood more regularly and increase his injections.
We cannot just grab Mac and run out of the house, we need to ensure we have packed both his needles (just in case something happens and we are stuck somewhere), low carb snacks, fast acting sugar, blood glucose monitor, water (if his levels are high he needs to drink more), plus all the other regular baby gear.
Yes, like most parents, I forget stuff but in our case if it is his low carb counted food, fast acting sugar, water or his insulin “kit” I feel even more shitty as my son could go into a coma if he goes low or feel really sick if he is high.
Like the time when I was still on maternity leave and out for a nice lunch with a friend and as I went to give him his insulin with his lunch I did not have enough for even half his dosage. It ran out. I had no insulin to give my son. Awesome.
My tears sometimes drip over Mac as he sleeps, my soul a little sad. My beautiful boy who knows how to put the testing strip in the glucometer, who pressed the insulin pen (no needle) into his skin and the lancet to his finger, as he had seen us do before. My son who will know no differently.
But I know and I read the heartbreaking stories of all of the other children and teens and adults who have grown up with this disease. The thousands of finger pricks, the site changes, the high and lows (both of which make you feel like complete crap) the carb counting…the everything all day and night.
There are the days when our minds completely fail and we give him the wrong dosage or the wrong needle – if we give him his long acting we are screwed for the next 24 hours as he has double the insulin in his body and the schedule is all messed up.
Our pens are different colours, one is blue and one is red – you would think it would be pretty impossible to mess up, but I do, and it makes me feel like a shitty mother. I am giving my son medication that can kill him and I fucked it up. Good one.
It absolutely sucks living with this disease and although I am trying my best, I often feel like I somehow failed him. I ate the wrong thing when I was pregnant, had him too late in life…you name it I have thought it.
But mostly I wish each and every god damned day that I could take this from him and wear it proudly so he does not have to.
There I said it. Now on with our lives and back to the business of loving, laughing and cherishing our beautiful boy. And yes back to the business of living with diabetes.