I thought I was doing pretty well with giving Megan space to be a pre-teen who just happens to also have type 1 diabetes. I am a bit type A and have a hard time letting her go. Little by little, with each success and step, I have been trying to step back and give her some room.
But then another reality hits. You read about type 1 teens dying in their sleep. How can I possibly relax and let her have some space when you hear things like that? How do these things happen? I secretly hope that it was because of a concrete reason that doesn't affect us; like lack of care, another underlying condition or a medical mistake. Seems wrong to hope these things, but I almost need to know these things so I can sleep at night. But the answer is not there - I don't know if anyone knows why it happens. It's just another reality of what this disease can do. How deadly it can be. But, in order to keep my sanity and keep moving, I have to just know that we are caring for Megan in the very best way we possibly can and that you can't control everything. I have to believe that we are doing well, and Megan is going to be okay. To wonder about the other side, the possibilities that these other poor families have faced, would be too much.
I guess its two steps ahead, one step back for my coping with this disease and its management. I am so glad that Megan doesnt seem to feel any of this stress. I don't let her know about these teen deaths, I don't think it is productive for her to be scared. As long as she is taking care of herself and managing her diabetes as the doctors directed, that is all we can do.
t
Thursday, May 5, 2011
Monday, May 2, 2011
Success!
What a big weekend for us! Megan had her first sleepover away from our house since she was diagnosed in August. I was very apprehensive, even though I knew that she could do it. I think my apprehension stemmed mostly from the fact that the sleepover was at a friend's house about 25 minutes away from ours. I kept having that thought in the back of my mind that I couldn't get to her quickly if something went wrong. As we get closer to the insulin pump start, I need to work on being able to let go a little. She is 12, and the time is coming that its not "cool" for me to always be around. I totally get that, I remember being 12! :)
She did amazingly well at the sleepover and was very responsible about her D care. I don't think I will ever relax when she isn't with me, but I know she is capable as a young adult to step away a bit and spread her wings.
She did amazingly well at the sleepover and was very responsible about her D care. I don't think I will ever relax when she isn't with me, but I know she is capable as a young adult to step away a bit and spread her wings.
Sunday, April 24, 2011
The start of something new
So we are now on day 5 of our saline trial for the insulin pump. Megan has come through it with flying colors! The first day or so was rough, she was upset because the infusion site was more painful than she anticipated. Dad is also sporting a saline filled Animas Ping - our doctor thinks it is important for the parents to really understand what the kids will be feeling. I think he is struggling with it more than Megan is! After the second day, we changed the infusion site and she seems more comfortable with it now.
I, however, am struggling with the pump. I feel like we are starting over again with my fear of inserting the infusion sites. Just like my initial fear of giving her injections. :) Now that is second nature so I know I will get there!
I also know the pump will help her stay healthier and keep her blood sugars under better control. But something about seeing it tethered to her makes me want to cry. It just brings the finality of this disease never going away to the forefront of my mind. I am constantly in awe of how she handles every change and new part of her treatment with such courage and acceptance. She is my inspiration to keep my emotions in check and keep chugging down our D road. She actually told me the other day that having T1 is what makes her unique. What I wanted to tell her, and every other T1 child I know, is that their incredible courage, resilience and amazing spirit is more of what makes them unique to me. The poem about God giving certain parents a diabetic child makes me think about how only certain children get or have T1. And how every one of the kiddos I know personally or know of is absolutely amazing.
Obviously, I am feeling a bit mushy today :). I watch her growing up into an almost teenager and wonder how things will change as she gets older. As of now, she wants to be a nurse that specializes in pediatric endocrinology so she can help other kids as her nurses have helped her. Who knows if that will stick? But I love that she wants to do it.
So, we will continue on our pump path! And watch her proudly wear it and know that it will all work out for her in the end.
I, however, am struggling with the pump. I feel like we are starting over again with my fear of inserting the infusion sites. Just like my initial fear of giving her injections. :) Now that is second nature so I know I will get there!
I also know the pump will help her stay healthier and keep her blood sugars under better control. But something about seeing it tethered to her makes me want to cry. It just brings the finality of this disease never going away to the forefront of my mind. I am constantly in awe of how she handles every change and new part of her treatment with such courage and acceptance. She is my inspiration to keep my emotions in check and keep chugging down our D road. She actually told me the other day that having T1 is what makes her unique. What I wanted to tell her, and every other T1 child I know, is that their incredible courage, resilience and amazing spirit is more of what makes them unique to me. The poem about God giving certain parents a diabetic child makes me think about how only certain children get or have T1. And how every one of the kiddos I know personally or know of is absolutely amazing.
Obviously, I am feeling a bit mushy today :). I watch her growing up into an almost teenager and wonder how things will change as she gets older. As of now, she wants to be a nurse that specializes in pediatric endocrinology so she can help other kids as her nurses have helped her. Who knows if that will stick? But I love that she wants to do it.
So, we will continue on our pump path! And watch her proudly wear it and know that it will all work out for her in the end.
Thursday, March 31, 2011
Blissful Ignorance
So it happened again today...a well meaning dental assistant at Megan's orthodontist said, "How is her diabetes? Is it any better?" I tried to be patient and said she was doing fine. I didn't launch into the tirade I wanted to about how it never is going to get better so I felt proud that I held my tongue. :) She asked if Megan had the juvenile kind and I said yes. She said, and I quote, "Oh, she has the bad kind." ?!?!? I felt like I was watching the video on you tube of stupid things people say. Then she proceeded to tell me that I needed to be careful about how I take care of her because her old bosses daughter had the juvenile kind - and she just turned 27 and has lost her sight. Perfect! Thank you so much for sharing. Are people really that ignorant? I understand that she was trying to be nice and helpful but for the love of God people, think before you speak! Megan of course heard her tell me about the vision thing and said "Mom, can I really lose my vision?". I felt so bad that she heard that well meaning but ignorant comment. The point is that the dental assistant can afford to be ignorant. We obviously can't, which is fortunate for her but annoying to me.
It just reinforces to me how important it is to educate the general public on the reality of type 1 diabetes. How Megan is most likely going to be just fine - and that her doctor said she will likely be more healthy than a non diabetic person because she has had to take better care of herself. How we know the risks to her health if we don't manage it properly. Anyone that makes ignorant comments like that about making sure we handle it properly should be forced to walk a day in a type 1 parent's shoes to see exactly how much we do handle it. Maybe then they would learn to think before they speak. I certainly would never walk up to someone with a chronic illness and warn them to take good care of themselves or bad things could happen. Duh! Enough said... :)
It just reinforces to me how important it is to educate the general public on the reality of type 1 diabetes. How Megan is most likely going to be just fine - and that her doctor said she will likely be more healthy than a non diabetic person because she has had to take better care of herself. How we know the risks to her health if we don't manage it properly. Anyone that makes ignorant comments like that about making sure we handle it properly should be forced to walk a day in a type 1 parent's shoes to see exactly how much we do handle it. Maybe then they would learn to think before they speak. I certainly would never walk up to someone with a chronic illness and warn them to take good care of themselves or bad things could happen. Duh! Enough said... :)
Wednesday, March 30, 2011
An intro...
A bunch of fellow T1 mommies have created blogs to share their experience and thoughts about our lives in the T1 world. It seemed like a good idea so here I go!
Megan was diagnosed on August 23, 2010. She was 11 years old. We had just gotten back from our summer vacation in Myrtle Beach, South Carolina. Both my husband and I had noticed while we were away that she was drinking a lot more than usual but just chalked it up to being at the beach. I noticed that she looked a bit smaller in her bikini but not enough to register it as unusual. When we got home, Megan had a horrible earache so I made an appointment for the next morning to get medicine for swimmers ear. I vividly remember being in Justice (the clothing store for girls) and her saying she was thirsty and needed a drink NOW. She drank an entire bottle of water in one go, just chugged it down and was looking for more. I knew at that point that something was not right. We went home and I was joking around with her that I had gained some frozen drink weight while we were away and told her to get on the scale to see how she did. She got on the scale and we saw that she had lost 9 pounds. 9 POUNDS. A little alarming. I got on the internet and starting googling, as I am known to do :), and every time I put in the symptoms it came back diabetes. I called my sister and told her what I saw online and we both said no way, it can't be. Must just something silly. We went to the doctor for Megan's ear and I mentioned what I had noticed the day before. He suggested we check her blood sugar to be sure so they did a finger pick and a urine sample. He came back in a few minutes later with a horrible look on his face. We know our pediatrician really well, his child has been in Megan's classes at school. He sat down on the exam table with Megan and said that she has diabetes. Even though I knew from looking online, I was shocked and was fighting back tears. Her blood sugar was 486 and she had large ketones in her urine. I remember him telling me that he wanted to show me something, and took me out in the hall. He put his arm around my shoulder and told me he understood how upset and scared I was, but that Megan was going to take her cue from my reaction and I needed to be strong and show her that everything was going to be okay. He called the pediatric endocrinologist that he knew and had her waiting for us at Fairfax Children's Hospital. Megan was admitted and our journey began. For the next three days, we learned about our new life. Every other T1 parent knows how overwhelming and scary all of that information can be. We were told by the nurses that we were lucky and that it was really unusual that we caught it as early as we did. They said that most kids come in a diabetic coma and are in the PICU. Megan was just in the regular unit and we were very thankful it didn't get as bad as what we had heard. We had many different doctors and educators visit us during her stay. We were sent home 3 days later, not completely sure we were ready to do this on our own.
That was the beginning of many sleepless and interrupted sleep nights. Sometimes I am little over the top in checking on her, but it makes me feel safer knowing she is okay.
It seems the more I learn about this disease, the more I am confident in our ability to handle it and the more it scares me of what it can do to her if we don't handle it right. People who don't have a type 1 diabetic in their family or circle of friends have no idea what our lives entail and what Megan goes through every day. She checks her blood sugar atleast 6 to 8 times a day. And that's a good day. Many times it goes way above that. We give her 4 shots of insulin a day. My husband or I get up every night at 12:30 am to check her sugar while she sleeps to make sure she doesn't go low in the night. If her sugar is high then, we give her an injection to bring it down. And stay up to make sure it doesn't go too far. If her sugar is low, we have to make her drink juice or a drinkable yogurt to help bring her up. She does this in her sleep and doesn't remember it in the morning. But we stay up and check her every 15 minutes until she is at a good number for the night. She does not wake for these checks either. I am very thankful that she is able to sleep through all of it.
I am also so thankful that I found a group of friends through our facebook Type 1 Parents group that I can vent to and they understand. I wouldn't have made it without them. Hearing their stories and sharing their experiences makes me feel not so alone in what we are dealing with.
Megan is amazing. She takes most of this in stride and keeps going. She is a very active young lady and hasn't let this stop her. Her doctor was adamant with us that Megan is a young girl first and foremost, just a girl who happens to have type 1 diabetes. Diabetes does not define her - nor will it.
Ok, background first post done! Let's go forward :)
Megan was diagnosed on August 23, 2010. She was 11 years old. We had just gotten back from our summer vacation in Myrtle Beach, South Carolina. Both my husband and I had noticed while we were away that she was drinking a lot more than usual but just chalked it up to being at the beach. I noticed that she looked a bit smaller in her bikini but not enough to register it as unusual. When we got home, Megan had a horrible earache so I made an appointment for the next morning to get medicine for swimmers ear. I vividly remember being in Justice (the clothing store for girls) and her saying she was thirsty and needed a drink NOW. She drank an entire bottle of water in one go, just chugged it down and was looking for more. I knew at that point that something was not right. We went home and I was joking around with her that I had gained some frozen drink weight while we were away and told her to get on the scale to see how she did. She got on the scale and we saw that she had lost 9 pounds. 9 POUNDS. A little alarming. I got on the internet and starting googling, as I am known to do :), and every time I put in the symptoms it came back diabetes. I called my sister and told her what I saw online and we both said no way, it can't be. Must just something silly. We went to the doctor for Megan's ear and I mentioned what I had noticed the day before. He suggested we check her blood sugar to be sure so they did a finger pick and a urine sample. He came back in a few minutes later with a horrible look on his face. We know our pediatrician really well, his child has been in Megan's classes at school. He sat down on the exam table with Megan and said that she has diabetes. Even though I knew from looking online, I was shocked and was fighting back tears. Her blood sugar was 486 and she had large ketones in her urine. I remember him telling me that he wanted to show me something, and took me out in the hall. He put his arm around my shoulder and told me he understood how upset and scared I was, but that Megan was going to take her cue from my reaction and I needed to be strong and show her that everything was going to be okay. He called the pediatric endocrinologist that he knew and had her waiting for us at Fairfax Children's Hospital. Megan was admitted and our journey began. For the next three days, we learned about our new life. Every other T1 parent knows how overwhelming and scary all of that information can be. We were told by the nurses that we were lucky and that it was really unusual that we caught it as early as we did. They said that most kids come in a diabetic coma and are in the PICU. Megan was just in the regular unit and we were very thankful it didn't get as bad as what we had heard. We had many different doctors and educators visit us during her stay. We were sent home 3 days later, not completely sure we were ready to do this on our own.
That was the beginning of many sleepless and interrupted sleep nights. Sometimes I am little over the top in checking on her, but it makes me feel safer knowing she is okay.
It seems the more I learn about this disease, the more I am confident in our ability to handle it and the more it scares me of what it can do to her if we don't handle it right. People who don't have a type 1 diabetic in their family or circle of friends have no idea what our lives entail and what Megan goes through every day. She checks her blood sugar atleast 6 to 8 times a day. And that's a good day. Many times it goes way above that. We give her 4 shots of insulin a day. My husband or I get up every night at 12:30 am to check her sugar while she sleeps to make sure she doesn't go low in the night. If her sugar is high then, we give her an injection to bring it down. And stay up to make sure it doesn't go too far. If her sugar is low, we have to make her drink juice or a drinkable yogurt to help bring her up. She does this in her sleep and doesn't remember it in the morning. But we stay up and check her every 15 minutes until she is at a good number for the night. She does not wake for these checks either. I am very thankful that she is able to sleep through all of it.
I am also so thankful that I found a group of friends through our facebook Type 1 Parents group that I can vent to and they understand. I wouldn't have made it without them. Hearing their stories and sharing their experiences makes me feel not so alone in what we are dealing with.
Megan is amazing. She takes most of this in stride and keeps going. She is a very active young lady and hasn't let this stop her. Her doctor was adamant with us that Megan is a young girl first and foremost, just a girl who happens to have type 1 diabetes. Diabetes does not define her - nor will it.
Ok, background first post done! Let's go forward :)
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