Last night was a bad Diabetes night x's two in our house. Maddison hit 389 and I hit 268 which hasn't happened for me in almost a year. What the hell? Was there a full moon? Up every two hours with corrections for us both (that weren't working as they should) has me feeling defeated and confused today, not to mention irritated and fatigued.
So, I was supposed to be working on an essay of how Diabetes has inspired my life. Our support group is participating in a global campaign, which is a creative expression competition to educate and bring together those with Diabetes. I am not thinking today is a good day for feeling inspired. Perhaps I should have started my essay earlier in the week on a "good" Diabetes day. But here goes. I will start my draft here.
My inspiration, my life
Diabetes came into my life when I was 10 years old. My father was Diagnosed at the age of 32. After the Doctors assumption that he could manage his Diabetes with "pills" based on his diagnosis age as an adult, my father ended up following the medical advice and remained on pills for many months. It wasn't until he went into DKA and had a finger amputation that the medical doctors decided he was Type 1 Diabetic and needed to be on insulin. 30 years ago this is the type of knowledge that even educated Physicians knew about Type 1 Diabetes. My father became the victim of lack of understanding the disease.
Fast forward to 2006. I was a happily married mother of two beautiful girls, I have a successful career and life is great. But I wasn't feeling well. I was tired enough to fall asleep at my desk, while driving, or any random time through out the day. I was thirsty. I was starving despite eating constantly. I was suddenly extremely irritable and had emotional breakdowns. I was sick. I thought I had a lingering flu because every muscle in my body ached. But, I was also in denial. That is until the day my blurry vision set in and forced me to my Doctor for my diagnosis. I knew this had been coming for quite some time. I knew in my heart. I knew early, thanks to having watched my father battle Diabetes every day. I had random symptoms for years after Non-insulin Dependant Gestational Diabetes with both my pregnancies. March 17, 2006 my own life changed forever.
I was terrified. I was terrified of the low blood sugar reactions that I knew were a common happening with Diabetes care. I remembered seeing my father often suffer serious reactions of insulin shock and stare blankly at the wall with empty eyes as his blood sugar fell dangerously low. I remember his many hospital stays for DKA that eventually lead up to kidney failure. I remember the day blindness set in, and I remember how he cried when he could no longer work to support his family because Diabetes had taken all he had. I was just diagnosed, and I already knew too much about this disease although I knew nothing about its management.
My fear quickly turned to anger in those first weeks. Then came the depression, the intense sadness and feeling alone. I had to get out of this darkness, I had two beautiful children that need me to be me again. I knew I wanted to be healthy again, to defeat the possible complications of poor management.... but I was completely discouraged and confused. Doctors had nothing to contribute to help me live with this disease. I had to educate myself. I knew that to educate myself, to take this disease into my OWN hands, that I would not have the devastating outcome that my Father today struggles with every day. My children already began to imagine me in Grandpa's place in the years to come, and asked me alot of questions based on their fear that Diabetes would defeat me too. I wanted the fear of Diabetes to end in my house. I wanted my children to know that with modern Diabetes advancements I would be back to thriving with health and happiness soon. So I turned to the online Diabetes community to speak with others that have been successfully living with Diabetes. I learned from the patients, the real experts themselves. I was taken in with welcoming ears that listened to my concerns, my complaints and fears. I was educated on different care approaches, given advice for adjusting insulin doses and taught how to actually defeat the highs and lows. I never had this type of education from any Physician. I was completely inspired by the online community and their knowledge and outlook of living with Diabetes. I was motivated and ready to begin my new life in defeating this disease and living healthy and happy again.
Nine months later, just as I was finding peace with my own Diabetes I realized my 6 year old daughter Maddison had alot of Diabetes symptoms. Although I had seen her symptoms for months even before my own diagnosis, I assumed that now I was just letting Diabetes make me paranoid. Over a few weeks she became more irritable, drinking more and suddenly wetting the bed. I KNEW this was bad news, but denial is a real thing. I had an excuse or reason for all her symptoms. It was summer in Phoenix, it was hot and drinking more meant peeing more of course! Then one morning I smelled the ketone smell on her breathe. She must not have brushed her teeth the night before, right? My family thought I was being paranoid since my recent diagnosis, and told me I was crazy. But a mom knows.
With panic I somehow pulled myself out of the denial. She was taken to the Pediatrician by my husband that day and I told him to mention I suspected Diabetes. The Doctor told him that she would be "more sick" than this if she had Diabetes. I told my husband to insist on urine check for sugar. With hesitation they obtained a urine sample. Sugar and Ketones were both present. The doctor tried to initially diagnose a urinary tract infection based on bed wetting and send them on their way. They decided to do a finger stick just in case because of my husbands persistence. 497. That number haunts me to this day, and yet again Diabetes changed our lives forever. I was so angry that my daughter was nearly misdiagnosed. She was nearly a victim of lack of Diabetes awareness, in a pediatrician for goodness sakes, in the modern year 2006!
I had just begun to accept my own diagnosis, and now I have to care for a child with a constantly changing disease? I am already emotionally exhausted from my own battles every day. I just could not accept Diabetes for my child. Although I felt educated and aware of what we were to be facing, I had no idea that this would hurt us again so much. It is an entirely different road ahead with a child that has Diabetes.
MY CHILD now faced 8-10 finger pokes a day. Multiple daily injections. But it isn't the finger pokes and injections that hurt the most. It is the knowing of the uncertainties she now faces in life. Her feeling "different" and "alone" as a child when she should be living carefree. For parents, it is the letting your guard down, to be slapped in the face with a serious low, or high and feeling the intense guilt. What hurts the most is the comments from uneducated people that think we did this to our child. Alot of people think we fed them too much sugar causing Diabetes.....Did she used to be overweight? Why are you letting her have that cake? The nighttime checks. The people that think Diabetes can be "controlled" and magically thinking it takes no more effort day in and day out. The common cold that is not so common anymore. The new school year with kids that question, teachers that have to learn the seriousness the hard way, with our child being the one that pays the price. Its the little girl that can't have sleep over's at her friends house. (someday soon I promise you that you can!) The haunting feeling you have when your child hoovers in the danger zone of highs for days. And knowing that nothing I have done to make it better can change that. The ketones that make you secretly cry in fear. The trampoline that makes me feel guilty for hating it. Summer swimming that takes planning, and a summer that is a learning experience at the mercy of our child that just wants to play, run and have fun all day. The constant adjusting. Always adjusting a dose and having to wait and watch to see the result. And praying that the adjustment is the right answer. The low that it caused. The high that it induced. Trying to take control. Day after day after day, after hour after hour. That 42 that you catch at 3am just when the last few weeks were so predictable. And knowing the possibility of what could have happened had you not checked that night. The sleep you will lose for the next few weeks as you try to forget the possibilities. A daughter that wants to have a cookie at the grocery store, and the man that feels he needs to speak his experience of Diabetes when he sees you use your insulin pump. The leg that he is missing. The words he speaks that poisons your child's mind and causes fear. The A1c that hasn't budged since your last appointment, despite your constant diligence in always managing better. Fearing that maybe your best effort isn't good enough. Wondering if she is just angry or is she high or low. Having to poke her finger to rule that out first. The siblings that live in fear and hurt too. Trying every day to be optimistic when you just don't know what the next blood sugar will bring for YOUR CHILD! Hating your insulin pump because people stare at it. Having to stop your play and check your blood sugar. That is why Diabetes hurts us the most.
You try to stay strong for your child, but those first few weeks I was a mess. An emotional train wreck. I couldn't eat or sleep. I was again living with constant fear in my life. Constant worry, after I promised Diabetes would not defeat ME, here I was again in a serious state of depression and wanting to seclude myself and family from the world. I was so angry. I felt so defeated in managing a child's diabetes. This was nothing like my own. Once again I found an online support group, this time for parents of children with Diabetes. Thanks to these parents, the experts themselves, they helped me to grieve, laugh, cry, rejoice in our achievements and educate myself on the road ahead with Diabetes in a child. I slowly came out of my darkness once again after months of going through an unspeakable roller coaster of emotions. If it wasn't for the online support and education from those parents I am not sure I would have gotten to where I am today.
Today, nearly two years since my diagnosis and 15 months after my child's diagnosis I am a changed person. I cherish every day for the good things, and carry with me the appreciation that we that we have Diabetes, a manageable disease. We could have been diagnosed with a terminal illness. But we are still alive, healthy and thriving, living life to its fullest every day. In some strange way we were given alot with our Diabetes. We have more compassion for others, for their differences, for their own struggles, whatever they may be. Our family has a stronger commitment to our health and each other. We find within ourselves a higher sense of strength, determination and accomplishment just for living this battle every day. Every day really is an accomplishment. We carry a sense of pride that we are who we are, and that we have the knowledge now to educate others about Diabetes.
Despite the fact that I may never accept Diabetes for my child, we have still in alot of ways been inspired. Our family is inspired to support other families by reaching out to them with a listening ear, a shoulder to cry on and the promise that we will get through this and help each other in any way possible. We can and will educate others about Diabetes. We can make a difference in our lifetime by supporting research and educational programs. We can instill confidence and determination in our children, ourselves and others to live healthy with Diabetes. We have a manageable disease, once that in 2008 continues to make miraculous strides towards finding better treatment options and in the future, a cure.
I have been inspired by the adults on the forums that helped me though my own first months with Diabetes. More so, I have been inspired by the parents of children with Diabetes through online forums. They have all taught me that through simply "being there" for other parents you leave an impact on each ones life and outlook of the future.
The person that inspires me the most, every day, is my daughter Maddison. As a little girl that has been through so much in the last 15 months, she always wears a smile on her face. Diabetes hurts her alot sometimes, and she always seems to make peace and move on. She is always forgiving. She lives life as though Diabetes is not even there and never lets her highs or lows keep her down for long. She is resilient, strong and even more confident now. Many times she is found educating her friends about Diabetes, and that makes me proud. She has the physical strength to ignore the constant poking and pump site changes without complaint. At the tender age of 7 that she knows that she must always take care of herself to promise her well being and health now and in the future. She believes in a cure. She maintains her innocence while secretly battling alot of emotions and physical feelings inside. Although she voices her sadness, worry and anger sometimes about Diabetes, she never complains. Every person, family and child with Diabetes is my motivation to help support efforts to find a cure. Every child with Diabetes is my inspiration to make a difference though education, support efforts and by reaching out to others every day in my lifetime. I guess in the end, something good can come from Diabetes after all.
