Let me start this by telling you, I do not want any pity. I want you to try and get a glimpse of our reality. I have been having a rough time, it has been building and today is the day...There may be a few F-bombs in here and who know what else. I guess that is my warning.
Diabetes fucking sucks. I may look like I have it together, my ducks in a row or whatever your preference is, but the truth is, I am far from it! I am a hot mess! I get very little sleep and am awake 2-7 times a night. Every time I wake up, whether in the middle of the night or in the morning, a panic rushes through me and as I go to her room praying I did not miss an alarm and I peek in to see if Kyli is dead in her bed. Every damn time! Add this to the fact that we lost a child when I was 20 weeks pregnant, gave birth, and her urn in my home...the fear of losing another child weighs on me greatly and diabetes does not help this fear.
Diabetes has put Kyli and I in tears too many times in the past few weeks and frustration everyday. We have not been in tears this many times in a such short time frame within the 5 1/2 years since diagnosis and all of it has to do with Kyli acting like a normal child. Diabetes is taking away some childhood experiences that all kids should be allowed to do. Kyli has been trying to sneak food and it is wreaking havoc on my child. Kyli has been eating snacks behind my back and not dosing for some of them, the insulin doses we have been giving have been useless and she has sat between 200-400 and she is feeling awful, but she keeps doing it because she is a KID!! And just like all kids, she was totally lying and telling me she wasn't sneaking and was telling me she had no clue why her sugars were so high. We are talking 2 weeks of hell, me getting up 2-4 times a night trying to bring her down and nothing was working. I was at my wits ends. The hardest part is knowing that each day that goes by with her sugars so high is another day sugar is pounding her body and damaging it. Out of my control, it is all up to her. Would you feel comfortable allowing your child to be responsible for their own life?! At times, I don't have a choice and poor thing, she doesn't either. Responsibility is always at our door, always and it freaking sucks.
This disease in NOT just eat your food, give yourself insulin, and then you will be just fine. It is hard!! It is like adding 2+happy+cupcake+scraped knee+heat+whatever else you can think of= you need more insulin or you need candy. While there is a basic science behind it that are so many variables. Mind you, we have rocked the shit out of diabetes these past handful of years, but damn I wish we could walk away from it.
I wish I could be naive to this disease once again, but that will never happen. It haunts me and taunts me everyday. As summer is in full swing and I logically know that with the heat comes more water drinking, but as I watch my 2 year old (who is right around the age of when Kyli was diagnosed) gulp down cups of water and the fear and anxiety rises in me every single time. I then have to impatiently wait for 2 hours after he has eaten and test his blood sugars for my own sanity. Not to mention, a majority of kiddos are diagnosed during puberty and wouldn't you know, I have another knocking on that door! I watch him like a hawk. Watch for drinking changes, energy changes, peeing changes. Today he took a nap (he never takes naps), I am flipping out. See it never ends and I watch my friends on FB make posts about their kiddos being sick. Most of them have received a post from me asking them to have their kiddos blood sugars tested when they do to the doctor. All I can think is how many must have ignored me because they do not want to have to poke their child's finger. Kyli does it 10 times a day, if not more. I wish I was naive and didn't have these worries not because of the work on me, but because I watch my child struggle with the responsibility and challenges this disease puts on her everyday.
My child has had a loss of a parent! I am her damn nurse more time than her Momma! I see her and it is, "Are you okay?" "Are your sugars low?" "You need to check your sugars and correct." More of that comes out of my mouth than anything else. I would rather have more conversations of her, who she really is. This kid has gotten the short end of a stick. Today I feel it, I feel it all and I am hating every minute of it.
What amazes me most, even with all of this crap...Kyli is an amazing and spunky kid. She loves life, but the past few days we are mourning the life and freedom she will never have. Me especially, because I am watching her struggle to do things every kid should be able to do and realizing more of these struggles will pop up as she grows older and she wants to be more independent, and she will fail miserably before we can figure it out. Someday, I will have to hand over the reigns to her and it will all be on her and what a burden it is to carry without a break.
