Our daughter was a happy, thriving, normal 8 year old girl when her entire world came crashing down around her on September 25, 2013. I was helpless as I sat and watched my daughter be held down by 4 people to get her IV line in; she was dehydrated and her veins weren't easy to pin down. She screamed, she tried to thrash, so I stepped in to be an extra set of hands. I held down her feet. I didn't know what she would do with those feet, but I was determined to make sure nobody would get a round kick to the jaw. She had little strength...but she kept fighting...her body was shutting down...but the fire was still there. I guess when you are 8 and filled with terror at what is being done to your body, it doesn't matter that you weigh only 43 pounds; you still have some life left. The tears streamed down her face and I almost lost it, but I didn't. I would not cry in front of her. I refused to let her see my own terror, though it was there in every pounding heartbeat in my chest.
*boom* *boom* *boom* *boom*
terror terror terror terror
We were brought into a room where we would stay for the next 2 nights. It felt like a glass box, since the wall into the room was just one big window, with a curtain for privacy. Hannah was in the bed and they were asking her what she liked...movies, coloring, crafts? She liked them all. She is artistic like her father, and soon they would bring her many activities to pass the time we would spend there in that room. But, we waited for the doctor. It was dreamlike by this point; I could not wrap my head around any of it. I knew where I was...the Pediatric Unit of Utah Valley Hospital in Provo, Utah. I knew why we were there...my daughter was peeing a lot and had a UTI.............no........not a UTI.....our family doctor had sent us over immediately after testing Hannah's urine and finding an excess amount of glucose in it. We were there because the sequence of events led to a diagnosis of Type 1 Diabetes.
*boom* *boom* *boom* *boom*
terror terror terror terror
What would follow would be days of doctors, nurses, and tears. We heard terms we had never heard before. Learned how to take care of our newly diagnosed daughter. We took over 8 hours of training from a specialist and a nutritionist, right there in our tiny glass box. We struggled to grasp at our new reality, and then, on the last night before we would be released to the world with this....newborn baby that could die at any second....Hannah turns to me and asks,
"Mom, so, how long will I have diabetes? When will I stop needing the shots?"
My answer was obvious...I'm fairly certain she hated me in that moment, and I was okay with that. She could hate me, she could hate this disease, she could hate whatever she wanted. I needed her to cry and get it out and deal with it, because I knew it wasn't going anywhere and I knew this would never get easier. I needed her to get mad and scream, because I had been holding all those emotions inside my own shell of a body, and for some reason it felt like a release for her to express those feelings for me. I held her and we cried. We were resigned to the fact that life would never be the same...our old Hannah was dead and we had this new Hannah to help take care of and help thrive.
Don't take any of this as me being whiny or loathing or "poor me". I saw something click in my daughter's eyes that gave me strength like nothing ever has. I watched my 8 year old child grow up over night and start facing this beast head on like the warrior that she is. She is the true hero to all that know her. She is the one that has felt the literal highs and lows of this horrendous disease, and keeps finding things to laugh and joke about...to smile about...loving her life in spite of the ever present and constant fear that lurks behind our every move.
I have watched my daughter come out of a seizure due to a low blood sugar, despite my every effort to prevent it since the day she was diagnosed....
Physical activity, weather, hormones, the moon's lunar pull....ALL these things affect her blood sugars. There is never a day that she doesn't fluctuate. Her hands go numb from the lows, she can hardly walk, and sometimes she doesn't catch them in time. We have tools that help us try and stay ahead of traumatic experiences, but, they are only tools. They are NOT a working pancreas. Hannah fights every day to find happiness and has always enjoyed going to school. I have always felt a sense of peace with her being at school because of the 504 aid that was there. She knows Type 1 Diabetes; she lives it every single day with her own daughter. She was the one person that brought me comfort when I had to leave my daughter at school that first day after diagnosis. I have never been more terrified in my life. She was in the "honeymoon" phase of diagnosis and lows were sudden and unexpected. It would take a while to sort out her injections and we were working closely with her endocrinologist on that. We still work closely with him, and I can tell you right now, he will disagree with your assessment that Hannah should be more self reliant in her diabetes care.
Actually, the ADA disagrees with you too, and every single parent of a diabetic child that is losing sleep every night because of fluctuating blood sugars. Self reliant at 11.......would you expect your child of that age to make life or death decisions about their health? That's what you have now put on my daughter because your district nurse has deemed it unnecessary to have a 504 aid any longer at Dry Creek Elementary. I am here to tell you YOU ARE WRONG. You know nothing of what it takes to make sure our kids stay healthy and safe. You obviously have not paid attention to all the horror stories of kids passing out in hallways ALONE due to neglectful schools reneging on their end of the bargain......that bargain you make with EVERY parent to keep their children safe while you have them in your care, type 1 diabetes or not. Your job is to keep Hannah safe. Period. You seem to think that by cutting our 504 aid's hours you are upholding your end of the deal somehow...or maybe you are simply trying to wash your hands of the responsibility of it all.
Hannah has a 504 set up; I'll give you fair warning right now, if anything happens to my daughter while she is away from me, in YOUR care, you will quickly see how unfounded your opinions about self reliance are, and, you will feel the full wrath of this mama bear come down on your heads. I know our rights and I promise you will quickly learn those rights the hard way. You will learn that there is nothing more fierce than a mother who has fought hard for her daughter to be kept safe, only to be told that responsibility should fall on the child. No. You are wrong. It is your responsibility, not hers. She is 11 and she deserves to have whatever childhood left that she can.
You have poked the wrong bear. I am tired. I am worn down. But, I am a fighter, too.