Or at least it feels like another member of the family... Type 1 Diabetes.
Noah was dx with this disease on July 25th @ exactly 5:05 pm. It is one of those moments - an exact moment in time that replays over and over in my mind in slow, slow motion and will, I assume, continue to do so for a long time to come. It is not just the events that play out for me repeatedly, but the emotion, the fear, the regret, the guilt. Although from all accounts - there is nothing as a mother that I could have done to prevent this. I am told that this is an autoimmune disease - that Noah's own immune system attacked the beta cells in the pancreas that produce insulin. I am an otherwise smart woman and easily grasp concepts like this. Unfortunately, I cannot help but have feelings of guilt and regret. Did I do something? ANYTHING that would have contributed to this dx? Was there ANYTHING I could have done to prevent my son needing to rely on man-made insulin in the form of injections for the rest of his life? No - I know, I know. But still.....
Anyway, I bring this up here as a way to vent and also as an introduction to the blog. Frankly, this will be a topic of much discussion by myself here. It is SO much of what my day to day life is about. I'm told by those who have been dealing with this disease for several years that there will in fact come a day where it (it being the new care and keeping of my son) will become so second nature that I will (we will) not think twice and that eventually we won't feel like we have Diabetes as a family member. I don't see how that is possible - but am open to the idea.
I would never ever admit this to my son, but I now live in a constant state of fear. Fear that I will lose my son, fear that his body may pay such a huge price for this disease that eventually his eyes or heart or kidneys or limbs will give out - something that happens daily in the lives of Diabetics who haven't or couldn't control their blood sugars. This is not what a mother wants for her child.
Now I understand that there are FAR more dire things that could have been given to my son and/or family to deal with. There are people who go through much MUCH more trial and tribulation than that of Diabetes management. I realize this. I've seen this. However, I'm a mother of a Type 1 Diabetic who is only 3 months past dx. I need time. I need time to further understand and educate myself. Time to see that everything will be okay.
To that end, I dug in and started looking for something - anything - that would improve my son's ability to get better. I found that there is no cure for this disease....YET. I'm told that pt's with this disease have been told for yeeeeeaaars that the cure was just around the corner. However, new advances have been made allowing for continuous glucose monitoring, more accurate testing of glucose levels and more accurate dosing via pumps. My understanding is that there is a closed loop option coming soon - allowing a continuous glucose meter to talk directly to an external pump that would automatically dose a person. I want to do everything I can to help my son preserve his honeymoon phase (a short phase in children whereby their pancreas still produces a little bit of insulin). My hope was/is that by preserving some pancreatic function that if and when the time comes for a *cure* (however that cure may be delivered), that Noah would have a better chance of healing or being helped out. It's a hope - a pipe dream maybe?
I found a study for Noah to participate in. After explaining the ins and outs of it rather candidly with my then 9 year old (a recent birthday has him at double digits now :) ) he was just as enthusiastic about participating as I was! So, we began a long journey last month involving monthly trips to Denver, CO and requiring 2 long stays in Denver 6 months apart. The study will run at least 2 years but may require longer monitoring. This study involves giving my son an auto-immune drug that attacks the T-cells that are attacking his pancreas (have I said that word enough yet today? ). The hope is that by shutting down the attack on his body that he will remain in a honeymoon phase for upto 2 years longer than he may have. So far, the drug used has been tested and shown very positive outcomes on this front. Our fingers are crossed.
I believe that we all come here with a "lot in life" some have harder lots to deal with. I am looking for the positive in what we have been given thus far. I have no doubt that this is one of many things we will deal with in our lives together. I am confident that we have much to learn from this new family member - all family members bring something to the table, yk? I believe that there is a God in Heaven aware of what my family is experiencing and will help us through this. That knowledge brings me peace at the toughest times.
Anyway - this may not seem like the Readers Digest version of the story - but I swear it is! There has been so much much related to the topic that we've experienced - I would love to jot it all down but have some time constraints. In this particular case, I have an hour to accomplish quite a bit before picking the kids up from school and beginning the long process of homework, dinner, family time, nightly routine etc.
'till next time.
Noah was dx with this disease on July 25th @ exactly 5:05 pm. It is one of those moments - an exact moment in time that replays over and over in my mind in slow, slow motion and will, I assume, continue to do so for a long time to come. It is not just the events that play out for me repeatedly, but the emotion, the fear, the regret, the guilt. Although from all accounts - there is nothing as a mother that I could have done to prevent this. I am told that this is an autoimmune disease - that Noah's own immune system attacked the beta cells in the pancreas that produce insulin. I am an otherwise smart woman and easily grasp concepts like this. Unfortunately, I cannot help but have feelings of guilt and regret. Did I do something? ANYTHING that would have contributed to this dx? Was there ANYTHING I could have done to prevent my son needing to rely on man-made insulin in the form of injections for the rest of his life? No - I know, I know. But still.....
Anyway, I bring this up here as a way to vent and also as an introduction to the blog. Frankly, this will be a topic of much discussion by myself here. It is SO much of what my day to day life is about. I'm told by those who have been dealing with this disease for several years that there will in fact come a day where it (it being the new care and keeping of my son) will become so second nature that I will (we will) not think twice and that eventually we won't feel like we have Diabetes as a family member. I don't see how that is possible - but am open to the idea.
I would never ever admit this to my son, but I now live in a constant state of fear. Fear that I will lose my son, fear that his body may pay such a huge price for this disease that eventually his eyes or heart or kidneys or limbs will give out - something that happens daily in the lives of Diabetics who haven't or couldn't control their blood sugars. This is not what a mother wants for her child.
Now I understand that there are FAR more dire things that could have been given to my son and/or family to deal with. There are people who go through much MUCH more trial and tribulation than that of Diabetes management. I realize this. I've seen this. However, I'm a mother of a Type 1 Diabetic who is only 3 months past dx. I need time. I need time to further understand and educate myself. Time to see that everything will be okay.
To that end, I dug in and started looking for something - anything - that would improve my son's ability to get better. I found that there is no cure for this disease....YET. I'm told that pt's with this disease have been told for yeeeeeaaars that the cure was just around the corner. However, new advances have been made allowing for continuous glucose monitoring, more accurate testing of glucose levels and more accurate dosing via pumps. My understanding is that there is a closed loop option coming soon - allowing a continuous glucose meter to talk directly to an external pump that would automatically dose a person. I want to do everything I can to help my son preserve his honeymoon phase (a short phase in children whereby their pancreas still produces a little bit of insulin). My hope was/is that by preserving some pancreatic function that if and when the time comes for a *cure* (however that cure may be delivered), that Noah would have a better chance of healing or being helped out. It's a hope - a pipe dream maybe?
I found a study for Noah to participate in. After explaining the ins and outs of it rather candidly with my then 9 year old (a recent birthday has him at double digits now :) ) he was just as enthusiastic about participating as I was! So, we began a long journey last month involving monthly trips to Denver, CO and requiring 2 long stays in Denver 6 months apart. The study will run at least 2 years but may require longer monitoring. This study involves giving my son an auto-immune drug that attacks the T-cells that are attacking his pancreas (have I said that word enough yet today? ). The hope is that by shutting down the attack on his body that he will remain in a honeymoon phase for upto 2 years longer than he may have. So far, the drug used has been tested and shown very positive outcomes on this front. Our fingers are crossed.
I believe that we all come here with a "lot in life" some have harder lots to deal with. I am looking for the positive in what we have been given thus far. I have no doubt that this is one of many things we will deal with in our lives together. I am confident that we have much to learn from this new family member - all family members bring something to the table, yk? I believe that there is a God in Heaven aware of what my family is experiencing and will help us through this. That knowledge brings me peace at the toughest times.
Anyway - this may not seem like the Readers Digest version of the story - but I swear it is! There has been so much much related to the topic that we've experienced - I would love to jot it all down but have some time constraints. In this particular case, I have an hour to accomplish quite a bit before picking the kids up from school and beginning the long process of homework, dinner, family time, nightly routine etc.
'till next time.
No comments:
Post a Comment