Today’s Health Activist Writers Challenge truly challenged me. What was the hardest lesson that diabetes has taught me? I thought and I thought. I struggled. I ignored the question and did other things. Diabetes is so life consuming. What is the hardest part? Its all hard isn’t it?
What is harder than not knowing if your child will live or die? What is more disturbing than never having a full night of sleep again? What is worse than living in fear that the devise attached to your child could kill him? What is worse than wondering if you will wake to find your child dead in his bed?
There are probably a lot of things. My son can lead a relatively normal life with diabetes. It is not a death sentence but a sentence to live life to the fullest valuing every second. So is that the big lesson for me? The real value of life? No, actually I don’t think so.
For me, its a lesson that I am still working on. Its called patience. That is the challenge of my life. Its further reinforced by all of those other challenges. Its waiting, watching, not always knowing what tomorrow will hold. Not being able to change what I want to change as quickly as I want and having to learn to live with what is happening right now.
At 3am, I have to be patient, wait, and hope that the juice I have given my son will really bring up his blood glucose level to a safe range. When it doesn’t, I have to have faith that with more sugar, he will be okay because I am there to watch over him.
As a toddler, I had to patiently learn how to handle a child who did not want to eat despite having insulin in his system that required food. I had to be patient with him as I made him watch tv until his blood glucose was in range when he desperately wanted to be outside playing with his friends instead.
When my son went to school, I had to patiently teach the staff in his school to watch out for signs of highs and lows. I had to help children around him to understand why he may seem “funny” at times and that his pump was not a toy. I had to be patient and have faith when I allowed him to go on school trips and outings without me.
As my son ages, I am still challenged (and not always succeeding). Now we are at an age when he wants and needs independence. I have to be patient as he stumbles with his care. Stumbling now is still safe. Mom is here to clean him up, fix the highs, change the sites and get him back on track. I have to have patience and know that one day he will learn. One day he will take over his disease and one day he will amaze me with how much he really does know.
For now, patience and I still remain at odds. I get frustrated. I get scared. I want him to be okay now. If I can’t have a cure, I don’t want him to have to worry about the high cost of keeping himself healthy. I want changes in health care now. I want schools to understand that you cannot see diabetes but the impact of highs and lows are real and truly are debilitating.
I keep wanting, and diabetes keeps making me wait. I have learned a bit of patience. I do know how far my son has come. I can see him taking care of himself…sometimes. I know that we have made inroads with governments. I have learned that change is slow and my frustrations only make my life (and those around me) miserable. Slow and steady will see me through. One day I will be a patient person, in the meantime…well I will keep trying!