Im not sure what to call this post to do it justice. Today Im having an angry day. Im just plainly pi$$ed off at diabetes. I didnt want this for my life - who does? I didnt want this for my beautiful baby son and his future.
Somewhere I read the argument that type 1 diabetes is organ failure.
Yes it is.
Pancreatic Organ Failure. Its incurable.
The governement gives me $50 a week to totally manage and care for a child with organ failure? (Who can be angry at them with this generous offering!)
Who thinks when they give birth and wrap their baby son in their arms and promise to love and look after him forever that they will have to look after a dead organ as well? (His pancreas has clearly failed him and without us tending to his insulin everyday he wouldnt survive.)
I want to blame myself in some way for the DNA Athony and I contributed that got him this darn disease. Maybe if I never married my husband we couldve had healthy kids with other people. I know its all senseless and pointless but at times you whip yourself with these accusations. Right now I feel anxiety about this same DNA making up my other 2 kids and if at some point they will be diagnosed also. (I do test them to check. I do worry when they drink alot of water or go to the loo alot. I worry if they seem to lose weight , or smell sweet).
On the outside we are coping. We have to get by. I prepare school lunches, I set up the slow cooker in the morning, I clean my house,I brush out the bichon frise, I drag myself to rounds of swimming lessons, kindermusik, tennis lessons. All this I would do if diabetes had never reared is ugly beastly head. My kids shouldnt miss out because our lives have been touched by diabetes.
Im angry because it isnt fair. We dont know half of what the coming years will bring but Ive learned to be assertive. To stick up for us as a family unit when we are struggling and just cant take anymore. I have to stand in the gap for Reuben and speak my mind because the boy can only say 20 or so baby words and 'insulin' isnt one of them !
I will not accept abuse from people who are supposed to love and support us - we learned to say NO. I wont tolerate conterfeit versions of love and care at this time, nor manipulation or guilt because we wont play your stinking games. Selfishness is super unattractive to parents managing Type 1 Diabetes.
Nor ridiculous expectations from systems when you are dealing with chronic illness. Yes sometimes my older son will be 5minutes late for school because I have to treat a hypo. So sorry I stayed home to prevent my baby son having convulsions or slipping into a coma. NOT.
Nor beaureaucracy and red tape-
Nor incompetence from so called professionals (The local kindy where Jo Jo goes told me they were glad I cancelled Reubens enrolment because she didnt feel her staff were up to it.)
Nor inconvenience from multi national conglomerates who are supposed to provide what you pay for. (Yes Im talking about drive through restaurants who sell chicken and somehow do not have chicken. **rewind** True story they offered me a chicken patty off a burger instead of hot n spicy chicken as they had RUN OUT of chicken. WTF? Somehow drive thru's become -' park and wait 15minutes for your food').
Okay Okay. I hear you! It isnt the pimply faced kid at Mc Fried Chook's fault that Reuben has diabetes. I know that. They earn only a few bucks an hour. But I complained because I have rights as a customer to expect service when they are the ones claiming speedy service. It should be fast food like they claim. We carry food incase of hypoglycaemia but thats not the point. Reuben shouldnt have to eat crackers instead of nuggets. We were taking the whole family for dinner and timed it around his schedule we didnt calculate the additional 20 mintues waiting for the new batch of food to cook!.
This anger is healthy at this point Ive accepted that its bubbling away like lava. Sometimes it just has to be vented. I by passed the guilt, it really isnt my fault! I have dealt with denial (no amount of denial makes type 1 diabetes go away). Now Im pi$$ed. I wonder whats next?
I hope I replace it with hope. I hope I replace anger with optimism. I hope its optimism for the future.. I hope its beleif in better management tools for diabetics. I hope its better prospects of a cure and more public awareness and understanding of this hidden disease. I hope its policy and governmental decision making at budget time with diabetes in mind.