Monday, December 30, 2013
Friday, December 13, 2013
Yesterday my friend Tom Karlya asked the question, "Do you wish you had a lot more knowledge about (not the managing aspect) of what ‘it meant’ when you or child was diagnosed with diabetes?" It got me thinking back to our life in the early years of diabetes.
I had no knowledge of diabetes before my son was diagnosed. My mom had a friend with a son with diabetes but I knew them in the days before reusable pens, home blood glucose testing and the popularity of insulin pumps. He was just a child who sometimes got to lay on the couch rather than play outside with the rest of us.
A bit more knowledge of the symptoms may well have empowered me to ask more questions and demand better answers the very first time my son was taken to the hospital. Hindsight is always 20/20 however.
After diagnosis, there was also a period of ignorance. I knew about Dead in Bed and I was suitably terrified. I understood highs and lows and really didn't want to leave the perceived safety of the hospital. When we were forced to go home, terrible things did happen. One day my son was whining and demanding to go inside. It was the first nice day after a long winter and I was enjoying getting some yard work done. I made him wait. He passed out in the dirt. I didn't know that his whiny toddler behavior was also a sign that his bg levels were dropping. I learned quickly after that.
Our first illness and broken arm were also dealt with in relative ignorance. I was still trying to wrap my head around what to do and how things worked. I gave him insulin no matter what. I prayed he would eat--he often didn't but when he was sick, that seemed to be okay. Ignorance allowed me to continue somewhat buffered. I didn't fear all of the things that could go wrong. I was clinging to my own sanity, overwhelmed by what I did know and not able to begin to think of all that I didn't.
My heart goes out to the nurses and doctors out there who do know. The ones who can "see" and imagine to the extreme. Ignorance allowed me to learn at a pace that I could psychologically handle. A bit more knowledge before diagnosis may have saved us some serious stress but after? No thanks, the learning curve was steep enough.
Monday, December 9, 2013
In July of 2011, I sat down and posted my thoughts on the blue candles. Those of us in the Diabetes Online Community know them all too well. They are candles lit when a person with diabetes loses their fight with this disease.
Last week I saw them appear twice. A young boy around 11 years old and then another child just beginning their life as a young adult dead at age 18. Heart breaking, painful and leaving us desperate for a cure, I also thought is was a good time to revisit that post. The circumstances of my life have a changed a bit. My children and I are both older but the feelings remain the same...
Blue Candles--they are the candles that we light in cyberspace to remember someone with diabetes who has lost the fight. Each month, each week, we seem to see these images pop up across the online community. As profile pictures are changed on Facebook stories emerge, fears grow and the desire for a cure is that much stronger.
Most recently the candles were lit for a bright, young fourteen year old girl. She was diagnosed when she was four years old. She laid down for a nap and her father found her dead on her bed a few hours later. The story sends chills down my spine. She did not die at night. She passed away sometime during the afternoon. We do not know many of the details. We only know that she was far too young to die.
I don't tell my son about these stories any more. He is almost the same age and has had diabetes for a few years more than she did. I don't light candles on my Facebook profile. I don't write about half of the stories that I hear. I can't. I read about these children--whether they are fourteen or forty, they are still someone's children. My heart breaks for the parents and the families. I hug my boys a little closer. I pray a little harder. I hope for the very best.
I was reading a story one day of another child lost and of course had teared up a little. Someone told me that many children sadly die each day. It could be a complication from cancer or an asthma attack but other diseases kill as well. It was suggested that I can't focus on these deaths and be obsessed or paranoid. I reassured this person that I wasn't. I read. I mourn. My heart aches for the families and I grieve for the life cut short before its time.
It is true that our children die crossing the street, riding in cars and playing in swimming pools. As parents, we do our very best to protect them. We teach them to look both ways before crossing the street. We put them in car seats and demand that they were seat belts. We teach them water safety and we warn them about the dangers of drugs and alcohol. All in all we do our very best to guide them and pray that they will be okay.
As parents of children with diabetes, we do all of that "normal" stuff and then we do a little more. We work to help them to recognize highs and lows. We test them as often as we can. We keep tight control to prevent complications and fear going too far and having to wake to a child gone because of a low. These fears are real. They do not keep me up all night but they do wake me up at 2am to test. They do not stop me from letting my son be a child but it does make me check his pockets for glucose and his cell phone when he goes out.
As a parent, I cannot protect either of my children 24/7 for the rest of their lives. I wish I could. As much as I love watching them grow, think and spread their wings, part of me craves for the days past when I held them tight and could keep them safe in my arms. They are growing. My oldest son is driving and almost out of school. My youngest is well into his teen aged years and venturing off on his own more and more. Diabetes or not, I can only pray I have done my best, continue to do as much as I can and leave the rest up to a higher power.
Last night was my son's first night home after a few weeks away. I went to bed and woke a few hours later than I had planned to but he was low. The story behind one of the recently light blue candles played itself out in the back of my head. After 45 minutes and a lot of juice, his blood glucose levels were back in range and I could return to bed. I said a prayer of thanks that I woke up to test him. I prayed for families who were not so lucky. I touched my son's hair and wanted to hold him tight and kiss him gently on the forehead like I used to when he was small. He is now a teen. If I did anything beyond quietly touch his hair he would wake up creeped out and would claim nightmares for the rest of the night! Instead, I watched him sleep and I thanked God that he was alive, healthy and happy.
I will test my son at all hours. I will remind him to bolus. I will deal with late night lows. I will demand to know where he is going when he leaves the house. I will preach the evils of smoking, drug use and the dangers of too much alcohol. That is my job and I need to know that when I close my eyes I have done that job to the best of my ability. This will never guarantee the 100% safety of either of my boys but its my very best and that is all a parent can ever do.