You ask me if I am okay. And, I am, I really, really am.
But truthfully, I want to yell and cry and say that I am not okay, but I don't have a choice. I have to be "okay" because my daughter has a disease that requires me to be"okay" 24 hours out of every single day. I do not have a vacation from Type 1 Diabetes. Neither does she. It is in every waking moment, in every single day and especially in every night in the dark...the silent hour in the night when everyone else in my town is asleep.
These are the things you do not know and maybe your never really cared to know. I didn't know either. I had no clue what Type 1 Diabetes was until it stole the life we had before.
In no particular order...our life with T1D:
*Sometimes I think I have some sort of sleep apnea because I have found myself at times, holding my breath while I sleep, until I gasp for air and wake up...desperately grabbing the transmitter next to my bed that reads her Blood Glucose every 5 minutes while she sleeps.
*My husband and I have had two overnights alone since her diagnosis (October 17th). Two nights alone. It's a lot to watch a T1D overnight especially when they are especially erratic because they are growing, it is hot, they are insulin resistant that day or...someone just farts, no rhyme, no reason.
*T1D has nothing to do with anything that we did or didn't do. It has nothing to do with how we eat, how she eats...in fact, it's just a shitty luck of the draw in an autoimmune disease. We have no family history, and she eats better than probably most adults. It is not anyone's fault.
*I pray for a cure...every single night...because she deserves better.
*She had to grow up overnight in a hospital bed when she was in ICU in Children's. She stresses over "what's a good food to eat" because she knows that too many treats will send her sky rocketing and she will feel tired and lousy...and she just wants to feel good.
*She has had two emergency trips to the hospital. One at diagnosis...the second with the stomach flu. Dealing with the flu with a T1D person is like Russian Roulette.
*She has given her own shots many, many times. She is best at giving herself her shot in her hip or leg. I have a pre-teen and teenager who don't like getting shots at the doctor and my 8 year old receives & may give herself up to 5 shots a day....just to eat...just to live.
*You say, "yay a birthday, a holiday, a treat!"....I cringe and wonder how hard she will sky rocket and then, how hard she will crash...it's just physics...what goes up, must go down....& while your children are running around hyper for hours on end, I'm treating her because she crashed so hard her blood sugar hit 44. Knock on wood, we haven't had to use the glucagon & call 911. She hasn't been so low she didn't know what was going on, she hasn't had a seizure and she hasn't been unconscious.
*We leave a trail of blood strips wherever we go. In fact, our house is dusted with them no matter how much I clean, sweep and vacuum...you are bound to find a blood strip.
*That being said, in my bedroom, you will also find a sexy mug of used syringes and empty juice boxes by my bed. Sometimes, shit happens & I don't always have enough time to clean that up. Luckily, it's just the 3 of us...so...it's no skin off our back.
*We are taking Pump classes and waiting for the insurance company to give the okay. Insurance companies are the biggest b****** of all. They just don't want to cover claims especially our families because between a little thing called cancer & T1D, we are an insurance companies nightmare. They hope we will just roll over and play dead. Luckily, I am a smart, tenacious & stubborn b**** & I will not let them get away with anything.
*She doesn't have a jam-packed schedule of playdates...because that would mean, I would have to spend time with the parent to "teach" them how to care for her while she's over the house. And frankly, I don't feel comfortable putting that on anyone unless I know they really want to do this. She's had 1 play date without me there....with a dear friend who lives down the street while I was home folding laundry.
*The pump is so god-damn complicated...I don't know if I can handle anther medical device. But they say they help with those lows...the ones that can send her into a seizure, unconscious, or the unthinkable. So, I am game....
*Some nights, I think God has played a cruel joke on our family. First Stage 3 cancer for me, and now this. It seems wrong...so very, very wrong.
*I know this affects my other girls' and I feel so terribly guilty. They need me right now more than ever as they are in the midst of puberty & all that load of garbage that comes with being a girl in middle school. Sometimes T1D steals their time too & that sucks.
And so....I continue to be fine, because I really don't have any choice. I have to be fine for my daughter, and smart, and open to learning all the time about this disease that "is so close to a cure." But still has none.
While we wait...I sit in the dark of the night, watching her sleep as I hold her transmitter in my hand telling me she is okay right now.
