The ranting of a mother and advocate for Type one diabetes. The founder of www.diabetesadvocacy.com welcomes you to journey through life with a son with Type 1
Friday, November 8, 2013
Watching the Stumbles from a Distance
My son has been living with his father now for two full months. I still walk into his room and hope to find him there. I still find used test strips in strange locations. I still wake at night thinking that I should get up and test him but it is getting easier. I am slowly learning to adapt.
I keep in touch with both of my boys on a daily basis. I still worry about both of them. I worry about the troubles that can find young men. I worry about many things that a parent will concern themselves with but I don’t obsess over any of it. I focus on how strong and independent they are. I pray that they always remember that I always want the very best for them.
My youngest son has been great about uploading his pump and touching base with me once a week to discuss his readings. I have worked very hard never to freak out at the lack of testing. I don’t scream at him when I see high readings. I normally just ask for more data. We discuss how different meters are functioning and talk about how to handle bad sites.
Stepping back and letting him make the decisions is very difficult. It’s not because I am a control freak (although that has had its challenges), it’s because I am a Mom. I want to protect my children from all ills. I failed him once by allowing him to get this disease. It has therefore been my job to protect him from the ravages of it. That’s how a parent thinks.
Yesterday my son and I talked about his readings. Once again I did not scream. I did not cry–but boy did I want to! I looked at the very few readings (maybe two per day) and saw none of them in range. All readings were incredibly high (a low reading was 14 mmol or 252 mgdl). My mind’s eye saw nothing but kidneys breaking down and eyes being damaged. I quickly reined in my imagination and remembered the concept of metabolic memory. I had prepared for this day. I had kept him in excellent control his entire life. The theory was that it would protect him through this time as he stumbled and found his own stride.
Instead of showing my obvious distress, I reminded my son that he felt bad when he was high. I asked him a few questions about his readings–”how long before you tested did you eat? So you were probably high for at least four hours previous.” I then set to work. I was nervous about making sweeping changes with so little data but I had to do something! I upped his rates almost across the board. I suggested that he might want to try to test a bit more so we could get a better idea of where we stand and help him to feel more like himself. I left it there.
This would have to be his decision. He had to decide to look after himself and make testing a priority again. We had met for dinner a month ago when I was near the town that he now lives in. I watched as he began to eat without testing. When I questioned him, he quickly took out the pump remote, tested and stated that he had forgotten because he was just so hungry. Perhaps that was the case but the data I have been seeing suggests that he just often doesn’t bother to take the time to test most of the time. He remembers to bolus however so I will be grateful for the things he does do.
I praised him for giving me the truth about high numbers. He was not using the pump remote for most readings so he could easily have lied about the 20 and 30s (360-540+) that I was seeing on his upload. I said that it was great that he was showing me these. We would work together to bring the readings more in range.
I have no illusions that things will change after this latest talk. We had a similar one a few weeks ago. That reality is what sets me on the edge of tears. He will see his diabetes team next week. I pray that they will help him see sense but again, I doubt it. He is 16. He knows best. He will have to learn on his own. One day he will hopefully realize that I was trying to keep him healthy.
I have spent the past 13.5 years teaching him how to take care of himself. He has the tools. Watching him not use them is heart-wrenching. Many adults with diabetes and parents with older children tell me that this will pass. One day he will remember all that he was taught and will get himself back on track. I do believe that–I have to. The hard part is waiting for that to happen and in the meantime standing on the side lines watching, guiding, and praying that the scrapes are no more than that.
My son is a good kid–both of my children are. They have never brought any trouble to my door. They have never been involved in any serious and dangerous behaviors that I know of. They have always been quite respectful of me and as I said, all around great children. Diabetes just adds that extra layer. It’s like that best friend that you really don’t want your kids to hang around with but they think he is the best thing going. You know the dangers that he can cause for your child and they think that they have him under control. Daily you pray that they are right…but it is terribly difficult.
I will continue to monitor my son’s long-time friend called diabetes. I will work to prevent as many scrapes as I can. I will be on the sidelines encouraging him to find his own stride and remembering that no matter what I have done in the past, this is his disease to learn to manage.