I HATE Diabetes!!!!!!!!!!!

If you are new to D life, or maybe just feeling optimistic today this is likely not going to be great reading material for you! I apologize in advance.

I'm having one of those days. My "life isn't so bad" mask came off today and I'm just fed up, distraught, disgusted, hopeless and sad. It happens.

My baby girl has suffered too much, I'm sick to death of sticking needles in her little bruised, pin-cushion body. I don't ever want to hold her down, screaming and crying and begging me not to hurt her again... ever!!!

I hate diabetes. I hate what it's done to me, to my life, to my family, but mostly to my baby. There are simply not strong enough words to convey my feelings on the matter, so ridiculously f*ing unfair and horrible will just have to do. I'm sorry but it's true.

My destiny was apparently to be surrounded by the unfairness of diabetes and I'm still not sure why. I've really tried to find a purpose in it. I haven't found it yet.

My dad had type 1 D, then called "brittle juvenile dibeetus", and his life was a nightmare. He had no options for decent control, no glucometer, crappy insulin, ignorant doctors, helpless parents and a clueless young wife who had to wake him most mornings by squeezing orange juice into his cheek. She got to watch him die when she was just 24. He also had two little girls who's lives would never be the same as a result. He was 30, I was 5, my mom was in nursing school trying to learn how to keep him healthy, it didn't matter.

I sat in the ICU waiting room for hours each day he was there. I hated the smell of the old smoldering coffee and the sound of the ridiculous soaps on the little TV. We weren't allowed to watch TV at home, but suddenly it became my daily babysitter. "Just wait here sweetie, mommy will be right back, everything's fine. Daddy will be feeling better soon and then you can see him again honey, I promise..."
The next time I saw him was at the funeral home and everything was definitely not fine.

My childhood was filled with chaos after that day. My mother was devastated by his loss and penniless and quickly remarried a man who turned out the be an abusive alcoholic maniac. Luckily the marriage didn't last and I had another step-father by the time I was seven. I'd attended five different elementary schools and lived in eight different homes by the time I was in the 4th grade. It was not the life my father would've chosen for his little girls. Too bad diabetes didn't give him that choice.

I actually turned out pretty well in spite of my rocky childhood; smart, driven, pretty and determined to have happy life. I fell madly in love with my high school sweetheart, the smart football jock with the family I'd always dreamed of. Everything was perfect, right down to the fairytale wedding and honeymoon on the beach. When he graduated from college we moved away for his job. I was pregnant and things were perfect, just as I'd planned! I did not understand why he became so lazy and irritable once he started his new job, but it was stressful and we were having a baby so finances were tight and I just tried to ignore him, I had a new focus after all.
It wasn't until we were back home more than a year later that things really started to bother me, things like his incredible laziness at home, then his endless thirst and then the frequent bathroom trips. I kept saying, "there's no way you have diabetes." "Why do you have symptoms of diabetes?", (can you say denial?)
So after a quick trip to the drugstore for some urine glucose strips we finally got a clue. The strip turned as dark as possible and we both new what that meant... or at least we thought we did. He was off to the ER and once again, life would never be the same.

Having the man you love, your child's father, the person who provides financial stability in your home suddenly become "sick" and at the mercy of constant blood sugar fluctuations is disenheartening to say the least. I was mortified, and with my past experiences related to D I had every right to be. I spent weeks laying awake at night, waiting for the inevitable lows that always came from the stupid 70/30 insulin his dumb ass endo had put him on. I woke him up several times in the first few weeks feeling for his pulse in the night. I was that scared.

I decided that we would conquer his diabetes together, control it perfectly day and night. What happened to my father could be prevented now, and what happened to my mother was never going to happen to me. I could not allow it. We read and researched and learned everything we could. I became a complete food nazi, forcing him on a super low carb diet and monitoring everything. I was a serious PITA, but my intentions were good and he appreciated it.... mostly. As time went by we adjusted and I relaxed and life went on, but I still needed security. I could no longer live a "carefree" life of staying home with my precious little boy. I had to have a career and make money and have a safety net for my child. I would not allow diabetes take any more from me than it already had.

Things were actually pretty great when we decided to have another baby three years later. My husband was now doing very well on a pump, living and working normally, healthy. My career was going very well, I was happy and in the best shape of my life. Our son was perfect. Life was good! We bought a new larger home and announced to the entire family on Christmas morning that we were adding to our family. How Sweet!

  ..................................................................................

The day I started to realize that Emma had diabetes was completely surreal. I knew what was happening, but I could not say it out loud, not to anyone. She was fussy, sweaty, tired and drinking... A LOT. I sat at the computer the night before we took her in and read about D symptoms. Not because I didn't know what they were, just because they could NOT be happening to my baby. Right? It had to be a dream.

She'd cried a lot that night, wanting bottle after bottle of milk to fall asleep, only to wake again wanting more. In the morning she drank two 8oz bottles of milk followed by three sippy cups of water.  I knew.

I waited until the pedi office opened and took the first opening. We rushed to get ready and I called daddy to meet us at the office. When we got there she looked great. A cute, chubby little baby girl with a big bow and a happy smile. She clapped her cute little hands while the pedi examined her. I told him all the symptoms she was having and waited for him to say the words I was dreading, but he didn't!
He said she was probably teething, that would explain the fussing, and the drinking... well, it's been over 100 degrees outside and everyone's thirsty. So I was finally forced to say it, "do you think she might have diabetes?" No! He didn't!
He said she was too little, too well hydrated, too happy, too healthy. D in a baby her age was very, very rare and a child with new onset diabetes would be very sick and very dehydrated, especially an infant.
I was immediately pushed back into denial, but if it wasn't D, why did I know something was wrong with her? I asked him to run labs, just to be sure that we weren't missing anything. He agreed.

Nick and I took our baby girl down to the lab for the horrible poke that would forever change our lives. We couldn't get her to pee in the little bag they'd stuck to her, so we went to the hospital cafeteria for some breakfast and she ate many bites of my syrup covered French toast, milk, cereal, etc. Then she fell into a deep sleep in her stroller. She was still dry when we left the hospital... how ironic, so we went home to wait on the urine sample.
She never stirred from the stroller to the car seat, from the car seat to the crib. She was drenched in sweat and in a deep, almost lifeless sleep, but I was still clinging to hope that it was nothing.
I called my sister and chatted nervously while folding some laundry. I didn't mention our trip to the pedi. What would I say? A few minutes later my call waiting interrupted our conversation. When I saw the hospital's name pop up my heart dropped. "Hang on a second, I need to get this call..."

Life since that day has been bittersweet. I have the most beautiful, precious little girl. She's happy and smart and is the picture of health on the outside. But it's just an illusion. She has endured things that no child should, most of it at my hands. She endures constant blood sugar fluctuations, never ending pokes and has been strapped to an insulin pump since before she could walk. She never gets to sleep through the night without being stuck with a needle. She has never had a birthday without counting carbs and the worry of balancing activity, insulin, excitement and the hundreds of other factors that affect her little body every moment of every day. While I was fighting to protect my children from the fallout of this f*ing disease it snuck right into my home and took my baby! There was nothing I could do to stop it.
She now also has arthritis that is damaging her joints. Nothing beats watching your beautiful, curly headed toddler limp down the hall on stiff legs each morning to get her blood sugar tested and drink some celebrex tainted milk to wash down her spoon of chocolate syrup and methotrexate....     Just f*ing unfair.

With Emma's dx's I lost what I clung to after Nick's. I had to give up my safety net, my career and any sense of control over my life. Managing a baby with type 1 diabetes makes managing an adult seem like a freaking picnic, there is no "control" to be had no matter what you try. It consumes you. I gave up decent sleep and without it I don't really have the energy to worry about working out or eating well. I rarely see my friends anymore. I struggle with depression as a result of all of it. I've also aged at least 10 years. It Sucks!!
My life is consumed by keeping my little girl healthy and happy and carefree as much as I can. She will have to endure this relentless disease for the rest of her life, so giving up this part of mine is the least I can do for her. I don't mind the sacrifice, but I do mind that it ever had to happen in the first place. It's all pretty f*ing unfair if you ask me.

I HATE Diabetes!