Getting invited to attend Children's Congress is a great honor. And, as it turns out, a lot of work! I have gone outside of my box and created a scrapbook and 3 videos. All are attached here! Proud of these kids- and not just mine! D- kids live life with a grace and a resilience I can only find inspiring!
http://www.youtube.com/channel/UCJTrzhpX_FmWkX5n7icIm5w
http://smilebox.com/playBlog/4d7a597a4d5455344e6a633d0d0a&blogview=true
Saturday, April 20, 2013
Monday, April 8, 2013
Look at the Ducks!
I follow a page on Facebook called "Type 1 (Juvenile) Diabetes Facts and Information". She posts really good information as well as some really funny stuff. She told me she finds the pictures searching on Pinterest when I asked about using this one here. The image of this made me chuckle out loud. Just this morning while walking to my car, I counted 4 test strips in the driveway. Seriously, the driveway! How does this happen? They were not there yesterday! They are so commonly seen laying about that even my husband notices them. He came home from the baseball field on Saturday and stated he had encountered a first. There was a used test strip at the baseball diamond and it wasn't ours! At least we are not alone in struggling to get these little suckers to the garbage can!
But, funny image aside, I found the ducks symbolic in another way. Way back in 2000, when I first heard the news of Tylie's diagnosis, my mind had immediately gone to the "horrible change" that had just happened to our lives. It was like those ducks in the picture were dive bombing me with "what if's" and "OMG's" and none of them were good revelations. I am going to spare you and myself the details of all those imagines because I don't like to visit that place in my mind. Suffice it to say, those images are also why I won't watch the movie Steel Magnolia's. Instead, I want to look at the ducks a different way.
When putting together our scrapbook for JDRF CC13 this summer, there was a lot of opportunity for reflection. On Tylie's page, she wrote that she "tries to be a good example for her younger siblings." And, she is in so many ways. She recently participated in a competition for DECA (a business, marketing club) and qualified for Nationals for the second time. Just this week, she won an event in a state journalism competition. She student manages for hockey, babysits for other families, works polls in elections, and plays soccer. She will go to college next fall and dreams of studying abroad. Diabetes does not slow her down and she never fails to find the humor in it. I can't help but to think all of these experiences will make her an amazing advocate in July. Taya on the other hand, HATES diabetes. There is rarely a day that goes by that she does not curse it. For her, finding the positive is a battle she fights everyday. At the same time, it doesn't stop her from living her life. She plays hockey and will be inducted into the National Honor Society this week. She studies hard in her effort to become a pediatrician. She recently got a job in a nursing home as a step toward her career in health care. While her approach to advocacy may not be as vocal as her sister's, I have no doubt she will have an impact on people's lives. TJ is an example of a kid that that truly "lives out loud." He never stops moving (or talking). He plays hockey, baseball, football and soccer. This weekend he was on his bike or jumping on the trampoline every chance he could. His dream is to play hockey in the NHL. (Ironically, the Ducks are one of his favorite teams.) He does all this, pump attached, without skipping a beat. His older siblings have taught him well and he is not afraid to tell others about what that thing is attached to his hip or why he has to poke himself before he eats. His confidence makes everyone around him confident. That was evident when I dropped him off at a birthday party this weekend and in the middle of me giving the parents my standard speech, the little birthday girl says, "It's okay, I know all about his blood sugar. I'll watch him."
One of my favorite quotes by an unknown author states, When the world says, "Give up," Hope whispers, "Try it one more time." I choose to look at those ducks- that endless trail of test strips- as hope. In our house we use an average of a little over 100 test strips in a week. That is over 100 finger pokes and each one of them to me symbolizes hope and promise. Hope that someday finger pokes will not be necessary and promise that until that day comes, we have options and opportunities. I will do my best to be sure my children see their life for the gift that it is. As a family, we will go to Washington and speak out about Diabetes. We will be there physically, but we will bringing in our hearts all of their "brothers and sisters" who have fought this fight before them and who are fighting it today and for those yet to know the challenge. Let's face it, some days are just hard and the easy thing to do would be to give up. But, something within these resilient kids makes them get up and keep trying. For them, I will gladly pick up a million test strips- bring on the ducks!
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| Excerpt from scrapbook for JDRF CC |
Thursday, March 21, 2013
A Day in the Life...
First, I woke up in the morning to the lovely sounds of whispers in the distance. Only they weren't whispers so much as roars and the distance was only about 5 feet! What was the problem, you may ask? Well, of course it was the hair straightener and that dreaded act of waiting for it! Somehow, it escalated to World War 2,627 and woke up TJ- poor kid, never needs to set an alarm. This was followed by something about wearing jeans or shoes without permission, me liking one better than the other, why don't we ever have anything good to eat, where are my car keys, can I have some money...you get the idea. Finally, I escaped out the door to work with a little bit of self-esteem and patience remaining. You would have thought I was safe!
At work, the first order of business was a presentation by two young boys with Cerebral Palsy. Considering my emotional morning and the girls impending appointments with the CDE, the timing was bad. It is never good when the teacher is in the back of the room crying. I was never at any point thinking, "Oh, my kids could have it so much worse." Instead, I was thinking of those boys' parents, of how exhausting some days can be, the constant list of needs and appointments and frustration. As the presentation ended, they showed a slide show of the boys - in their wheelchairs- doing things like riding in a boat, skiing, sledding, fishing and above all smiling, always smiling. They did not let their chairs slow them down, just as mine do not let their pumps get in the way. Realistically, I know they do not smile everyday, just as my children do not. But, it struck my as amazing that despite all they do and go through just to get up and get ready for a day, that they choose to smile.
With renewed optimism I set about looking for a a possible solution to stop the incessant fighting at my house. For the last year or so, we have been trying to figure out how to put a 5th bedroom in our semi-finished basement so that Tessa and Taya would not have to share. While my homebase kids were reading, I was also reading- about DIY projects. Just when I am thinking I have found a solution, my email dings. Did TJ bring a lunch today? It's pasta and his teacher is concerned. Of course! I knew I had to leave for work early in the morning so I packed it the night before and left it in the fridge- where it still was apparently sitting! GRRR- off to find that bag and deliver it before lunch ! It was beginning to feel like a Monday on a Wednesday and some of my new found optimism diminished.
Meanwhile, regarding the Diabetes Educator after school, Tylie was going to go by herself to the appointment as it was just a pump check up and I couldn't get out of work to be there at 3:00. Taya, I planned to meet for her appointment at 4:00. Through the course of the morning, she had informed me that she did not want me to go. I was okay with Tylie by herself as she is almost 18 and will need to learn to do some of these things independently over the next few years (OMG, scary, another blog!). But, I didn't want Taya to go alone. For one thing, she keeps too much of her feelings inside and I don't want her to think of it as being alone. Secondly, I am just not ready for her to be that independent. So, we are having a mad text messaging war and finally, she admits she doesn't want me to come because she knows it will be bad. Again, this is exactly why I want to be there and she agrees to let me go. She was right, it wasn't awesome, but it wasn't the worst either. Our CDE is so good with her. She never fails to find one positive every time we see her. A few years ago, we had an educator that was like a military drill sergeant and when even Troy cried at an appointment and refused to go back, it was time for a change. My dream, however, is still to get through an appointment without tears- well, that and a cure so we wouldn't have to be there at all!
Next on the agenda was to take Taya shopping for some "new room" items, followed by another doctor visit for Tylie. Pneumonia take three for her this winter! I won't list all of our winter ailments on top of the usual scheduled visits but honestly, I should get paid for my time in the Sanford waiting rooms and the pharmacy. This was followed by a shopping trip to make sure Tylie and Taya (and their dad!) had all the food supplies they will need for their weekend in Minneapolis. At 8 pm, I pulled into the driveway. Thank goodness Tessa had found the perfect track shoe the previous night so I could actually go home! It was time to kick back and put my feet up! Ha ha ha- of course not! We double checked set changes, insulin, strips, batteries and meters for the trip. Then we went back to the store to pick up the big item for the bedroom we couldn't fit in the car the first time around and a new Sioux sweatshirt for TJ for the big game today. Lucky for me, this trip was just Troy and me and it ended with a margarita and an appetizer!
Thursday, February 7, 2013
Can you Imagine?
Can you imagine
.... what it would be like to wake up every morning and the first thing you do- the very first thing- is to poke yourself in the finger to get a tiny sample of your own blood?
...having to leave math class mid- lesson, a friend's house in the middle of the play date, or worse, a hockey game right before your shift because your blood sugar is too high or too low?
... being late for a big event because your blood sugar was too low and you couldn't drive your car until it got back to normal?
...having to tell a little machine every time a carbohydrate crosses your lips so that little machine knows how much insulin to spit out to keep your blood sugar at a normal level?
...waking up in the middle of the night feeling funny because your earlier activity sent you to bed with a sky high blood sugar only to crash 3 hours later?
...changing your pancreas every three days?
My kids don't have to imagine, it's their life. As the mom of the kids dealing with these realities, I can tell you some days are just hard. Not only do they deal with typical kid/teenager things but they deal with Diabetes. With Diabetes comes responsibility, frustration, resilience, strength, courage but never, ever peace. It's a never ending battle to find a balance. The balance of insulin, the balance of friends who support you, the right amount of physical activity, the right amount of sleep. The tiniest thing can tip your precariously balanced teeter totter and throw you onto the merry-go round. As the mom, I get frustrated explaining to people that my children are not like everyone else. They may look like it and act like it, but inside their bodies, they have a renegade organ that puts their life in daily turmoil. I get angry at the coach who's expectations don't work in favor of our balance. I get annoyed at the assumption that this is something they can out grow or choose to have. I get anxious at the slightest sniffle because I have seen how sickness can make blood sugars go crazy and put them in a hospital. There are days that the pressure of being their mom makes me want to scream! Keeping them healthy is a full time job, a job that as parents we need to teach them to do well so they can continue to be the thriving, healthy young people everyone sees. But, then as parents we have our own balance to find because we can't keep them healthy if we aren't healthy ourselves. We have other children to raise and we need to make them feel the same love and support. I'll admit, too often that third girl of mine gets lost in our Diabetes shuffle and that makes me sad.
In an attempt to find a balance, humor seems to be my go to strategy, both at work and at home. As a result, I found myself chuckling to myself the other morning as a series of phrases were heard around our house. Phrases that without Diabetes I would have been a bit confused about-translation in parathesis.
Did you check? (Blood sugar)
Did you put in? (carbohydrate count/insulin)
What is your BS? (blood sugar though often feels like bull shit)
Did you poke? (fingerpoke using a lancet to get blood for a reading)
Are you high? (referring to blood sugar not drugs)
Mine is 104 so my BS is better than hers! (blood sugar reference made by small competitive boy)
and my personal favorite- "How's this butt cheek?" (looking for site on body for set change)
While funny in a stand alone setting, taken as a group and translated, it is another picture of living life with Diabetes. It is a full time job that nobody understands unless they deal with it themselves.
Last November, the kids decided to apply for the JDRF Children's Congress. It happens every two years. 150 children go to Washington and meet with legislators to tell their stories and paint a picture for those who don't live with it daily. To give a face to the disease and stress the importance of continued funding for research for a CURE, not just a treatment. As an applicant, they were to write a letter telling their story. I have no idea what the girls' letters said, as they didn't want me to read them. However, TJ and I wrote his together. On Tuesday, they got confirmation in the mail that of over 1500 applicants, they were chosen. In July, we will be heading to DC. When I was 8, the hardest thing I had to do each day was catch the bus to go to school. I had never even heard words like insulin, carbohydrate or Diabetes. When I was 15, I am pretty sure my hair and getting my bangs "just right" was my biggest concern, not where I could wear my pump with the least amount of difficulty (and visibility). At age 17, I just wanted to go to college and see the world. A good doctor and pharmacy in my college town was not even a blipp on the radar in my mind. I would like to imagine for them a world like the one I remember- a world where "pancreas" was science vocabulary not a job description! I am so proud of them for being willing to put themselves out there- to spread the word about living with something few people understand and many can't even imagine.
.... what it would be like to wake up every morning and the first thing you do- the very first thing- is to poke yourself in the finger to get a tiny sample of your own blood?
...having to leave math class mid- lesson, a friend's house in the middle of the play date, or worse, a hockey game right before your shift because your blood sugar is too high or too low?
... being late for a big event because your blood sugar was too low and you couldn't drive your car until it got back to normal?
...having to tell a little machine every time a carbohydrate crosses your lips so that little machine knows how much insulin to spit out to keep your blood sugar at a normal level?
...waking up in the middle of the night feeling funny because your earlier activity sent you to bed with a sky high blood sugar only to crash 3 hours later?
...changing your pancreas every three days?
My kids don't have to imagine, it's their life. As the mom of the kids dealing with these realities, I can tell you some days are just hard. Not only do they deal with typical kid/teenager things but they deal with Diabetes. With Diabetes comes responsibility, frustration, resilience, strength, courage but never, ever peace. It's a never ending battle to find a balance. The balance of insulin, the balance of friends who support you, the right amount of physical activity, the right amount of sleep. The tiniest thing can tip your precariously balanced teeter totter and throw you onto the merry-go round. As the mom, I get frustrated explaining to people that my children are not like everyone else. They may look like it and act like it, but inside their bodies, they have a renegade organ that puts their life in daily turmoil. I get angry at the coach who's expectations don't work in favor of our balance. I get annoyed at the assumption that this is something they can out grow or choose to have. I get anxious at the slightest sniffle because I have seen how sickness can make blood sugars go crazy and put them in a hospital. There are days that the pressure of being their mom makes me want to scream! Keeping them healthy is a full time job, a job that as parents we need to teach them to do well so they can continue to be the thriving, healthy young people everyone sees. But, then as parents we have our own balance to find because we can't keep them healthy if we aren't healthy ourselves. We have other children to raise and we need to make them feel the same love and support. I'll admit, too often that third girl of mine gets lost in our Diabetes shuffle and that makes me sad.
In an attempt to find a balance, humor seems to be my go to strategy, both at work and at home. As a result, I found myself chuckling to myself the other morning as a series of phrases were heard around our house. Phrases that without Diabetes I would have been a bit confused about-translation in parathesis.
Did you check? (Blood sugar)
Did you put in? (carbohydrate count/insulin)
What is your BS? (blood sugar though often feels like bull shit)
Did you poke? (fingerpoke using a lancet to get blood for a reading)
Are you high? (referring to blood sugar not drugs)
Mine is 104 so my BS is better than hers! (blood sugar reference made by small competitive boy)
and my personal favorite- "How's this butt cheek?" (looking for site on body for set change)
While funny in a stand alone setting, taken as a group and translated, it is another picture of living life with Diabetes. It is a full time job that nobody understands unless they deal with it themselves.
Last November, the kids decided to apply for the JDRF Children's Congress. It happens every two years. 150 children go to Washington and meet with legislators to tell their stories and paint a picture for those who don't live with it daily. To give a face to the disease and stress the importance of continued funding for research for a CURE, not just a treatment. As an applicant, they were to write a letter telling their story. I have no idea what the girls' letters said, as they didn't want me to read them. However, TJ and I wrote his together. On Tuesday, they got confirmation in the mail that of over 1500 applicants, they were chosen. In July, we will be heading to DC. When I was 8, the hardest thing I had to do each day was catch the bus to go to school. I had never even heard words like insulin, carbohydrate or Diabetes. When I was 15, I am pretty sure my hair and getting my bangs "just right" was my biggest concern, not where I could wear my pump with the least amount of difficulty (and visibility). At age 17, I just wanted to go to college and see the world. A good doctor and pharmacy in my college town was not even a blipp on the radar in my mind. I would like to imagine for them a world like the one I remember- a world where "pancreas" was science vocabulary not a job description! I am so proud of them for being willing to put themselves out there- to spread the word about living with something few people understand and many can't even imagine.
Thursday, November 29, 2012
Really Aware
November is Diabetes Awareness Month. I started out the month with the best of intentions. I wanted to use Facebook as a way to educate people about what it was like to live with Type 1 Diabetes everyday. That there is no vacation, that it's hard work, that it's exhausting, that it's frustrating, lonely, sad, painful... But, somewhere in the month, I got too busy with "living" I didn't get time for the posts. When I stop to think about it, I still think it is important for people to realize the day to day challenge of living with such an disease. However, in living our lives, I became more aware of not just the hardships of this crazy disease but the unexpected and random blessings.
We have met some amazing people that we never would have had the chance to know if it weren't for diabetes. Last night, I got a call from a mom whose 9 year old daughter was diagnosed with T1 and Celiac this summer. I have never met her before and, in fact, this was the first time we had talked. Within minutes we were laughing like old friends. Why? We have something in common that no one can really understand unless you live with it too. Who else would get the humor in your kid yelling, "Hey mom! I'm high!" and having the strangers around you look at you like they are considering calling social services? And then we sighed in understanding when we discussed the expense of gluten free bread and the challenges of trying to make it yourself. Then there is the group of families that I have met a few times at various events for diabetes but have not ever connected with on a regular basis. I might never actually meet some of them in person but when I read a post and hear about their challenges and their joys I feel like I am right there with them crying or celebrating. I know that if I need something- help with a kid, a partner in misery, a voice of reason- they would be there. That gift of connections goes for my children, too. Through Camp Sioux they have made lifelong friends, built their self-confidence and know that they don't struggle alone. Their health care providers never fail to hug and encourage them. The nurse at school is simply the best. Even the managers of restaurants who care enough to come out and meet the kid they are making the special meal for and to make sure his food gets to his table safely. We have also re-established connections. It makes me sad to think that I might have lost touch with a good friend forever if it hadn't been for her daughter's T1 diagnosis. While I would never wish T1 on anyone, I am thankful to have her back in our lives.
Two nights ago, in the middle of a set change, I caught the whiff of the insulin as it dripped from the plunger. My first thought was, "I hate that smell." My second thought was, "What if this wasn't an option?" So, yes, I hate the set changes, the pharmacy visits, the constant doctor appointments, phone calls, pump uploads, blood draws and all the rest that comes with the medication but I certainly can't hate the thing that gives my kids the options that they have! This clear little liquid gives them a chance to play hockey and baseball, run, dance, be active in school, participate in DECA, have a social life and just "be". That little box they wear is not a beeper or a cell phone but is much more valuable- it's their pancreas. As TJ pointed out once, "Diabetes isn't great, but I do get to wear this awesome machine!" These two things put together are not their cure- oh, how I wish they were- but they give them the choice that not everyone has and for that I am thankful.
Over a year ago, the mom of a player Troy had coached called me out of the blue. (Again with the past connections.) Her 3 year old granddaughter had been diagnosed with T1 and she wanted to be actively able to help when she went out to California to visit. She came over and met the girls and TJ and they talked to her about how they live with diabetes. They were honest with her about it being hard and that sometimes they hated it. But, when she asked if it limited what they did and their choices, their answer was, "mostly no." The girls gave her some of their children's books about diabetes,(TJ didn't want them- they had girl main characters,eww!) a little stuffed bear, and a backpack they had gotten from Camp Sioux that was pink for her to take to California and share with her granddaughter. She called me a few more times with questions throughout the year. This spring her granddaughter was also diagnosed with Celiac so we talked about that and how we meal plan and the difference in carb counting and gluten free food that is kid friendly. I have never felt that I went out of my way or that she inconvenienced me by asking for help. So, I was quite surprised a few weeks ago when she showed up at my house with a story. She said she felt grateful that she and her husband are able to help her son pay for their granddaughter's medical care. She told me about how when she was young she was very poor and it always had an impact on her and that she felt now that when she could give back it was important to do that. She thanked me and we chatted a bit longer. As she left, she handed me an envelope. I assumed it was a gift card to Starbucks, imagine my surprise when I opened it and found cash! And, not just a few bucks! I was shocked! Nothing I had done warranted that kind of reward. I felt that I should give it back but when I told Troy the story he felt that she would be insulted, she wanted to give the gift. The incredible thing was the timing. That very week we had had to make some unexpected repairs to a car we had not planned for in our budget. Her gift got us by in a tight time and hopefully taught my kids a lesson in giving back.
As Diabetes Awareness Month comes to an end and the holiday season rolls on, I am going to make a more conscious effort to be more aware of the positive things. I would like to ask the kids more questions about their day that doesn't involve diabetes management. I am going to try to not just focus on those missed finger pokes or boluses but instead cheer on the two extra she managed the previous day. I am not going to focus on the sleepless nights or the roller coaster blood sugar readings but be happy that today no sites fell out at inopportune times. I will smile and nod at the annoying parent at hockey practice who can't quit talking about how busy she is while in my head silently praying a low blood sugar doesn't ruin my kid's time on the ice. Sadly, Diabetes isn't going to go away tomorrow. I will continue to do what I can to try and give people a realistic picture of a family living with chronic illness. We laugh, we cry, we yell, we scream- and that was just today! It's easy to be aware of the hard stuff- it's always there, right in front of us or in the kids' case, attached at the hip, literally. But, along this unpredictable road, our lives have been touched by some amazing people who remind me to also tune in and be thankful for the hidden blessings.
We have met some amazing people that we never would have had the chance to know if it weren't for diabetes. Last night, I got a call from a mom whose 9 year old daughter was diagnosed with T1 and Celiac this summer. I have never met her before and, in fact, this was the first time we had talked. Within minutes we were laughing like old friends. Why? We have something in common that no one can really understand unless you live with it too. Who else would get the humor in your kid yelling, "Hey mom! I'm high!" and having the strangers around you look at you like they are considering calling social services? And then we sighed in understanding when we discussed the expense of gluten free bread and the challenges of trying to make it yourself. Then there is the group of families that I have met a few times at various events for diabetes but have not ever connected with on a regular basis. I might never actually meet some of them in person but when I read a post and hear about their challenges and their joys I feel like I am right there with them crying or celebrating. I know that if I need something- help with a kid, a partner in misery, a voice of reason- they would be there. That gift of connections goes for my children, too. Through Camp Sioux they have made lifelong friends, built their self-confidence and know that they don't struggle alone. Their health care providers never fail to hug and encourage them. The nurse at school is simply the best. Even the managers of restaurants who care enough to come out and meet the kid they are making the special meal for and to make sure his food gets to his table safely. We have also re-established connections. It makes me sad to think that I might have lost touch with a good friend forever if it hadn't been for her daughter's T1 diagnosis. While I would never wish T1 on anyone, I am thankful to have her back in our lives.
Two nights ago, in the middle of a set change, I caught the whiff of the insulin as it dripped from the plunger. My first thought was, "I hate that smell." My second thought was, "What if this wasn't an option?" So, yes, I hate the set changes, the pharmacy visits, the constant doctor appointments, phone calls, pump uploads, blood draws and all the rest that comes with the medication but I certainly can't hate the thing that gives my kids the options that they have! This clear little liquid gives them a chance to play hockey and baseball, run, dance, be active in school, participate in DECA, have a social life and just "be". That little box they wear is not a beeper or a cell phone but is much more valuable- it's their pancreas. As TJ pointed out once, "Diabetes isn't great, but I do get to wear this awesome machine!" These two things put together are not their cure- oh, how I wish they were- but they give them the choice that not everyone has and for that I am thankful.
Over a year ago, the mom of a player Troy had coached called me out of the blue. (Again with the past connections.) Her 3 year old granddaughter had been diagnosed with T1 and she wanted to be actively able to help when she went out to California to visit. She came over and met the girls and TJ and they talked to her about how they live with diabetes. They were honest with her about it being hard and that sometimes they hated it. But, when she asked if it limited what they did and their choices, their answer was, "mostly no." The girls gave her some of their children's books about diabetes,(TJ didn't want them- they had girl main characters,eww!) a little stuffed bear, and a backpack they had gotten from Camp Sioux that was pink for her to take to California and share with her granddaughter. She called me a few more times with questions throughout the year. This spring her granddaughter was also diagnosed with Celiac so we talked about that and how we meal plan and the difference in carb counting and gluten free food that is kid friendly. I have never felt that I went out of my way or that she inconvenienced me by asking for help. So, I was quite surprised a few weeks ago when she showed up at my house with a story. She said she felt grateful that she and her husband are able to help her son pay for their granddaughter's medical care. She told me about how when she was young she was very poor and it always had an impact on her and that she felt now that when she could give back it was important to do that. She thanked me and we chatted a bit longer. As she left, she handed me an envelope. I assumed it was a gift card to Starbucks, imagine my surprise when I opened it and found cash! And, not just a few bucks! I was shocked! Nothing I had done warranted that kind of reward. I felt that I should give it back but when I told Troy the story he felt that she would be insulted, she wanted to give the gift. The incredible thing was the timing. That very week we had had to make some unexpected repairs to a car we had not planned for in our budget. Her gift got us by in a tight time and hopefully taught my kids a lesson in giving back.
As Diabetes Awareness Month comes to an end and the holiday season rolls on, I am going to make a more conscious effort to be more aware of the positive things. I would like to ask the kids more questions about their day that doesn't involve diabetes management. I am going to try to not just focus on those missed finger pokes or boluses but instead cheer on the two extra she managed the previous day. I am not going to focus on the sleepless nights or the roller coaster blood sugar readings but be happy that today no sites fell out at inopportune times. I will smile and nod at the annoying parent at hockey practice who can't quit talking about how busy she is while in my head silently praying a low blood sugar doesn't ruin my kid's time on the ice. Sadly, Diabetes isn't going to go away tomorrow. I will continue to do what I can to try and give people a realistic picture of a family living with chronic illness. We laugh, we cry, we yell, we scream- and that was just today! It's easy to be aware of the hard stuff- it's always there, right in front of us or in the kids' case, attached at the hip, literally. But, along this unpredictable road, our lives have been touched by some amazing people who remind me to also tune in and be thankful for the hidden blessings.
Wednesday, October 10, 2012
Again with the Roller Coaster
So all last week I wanted to find time to blog because things were going great! I wanted to quick write about it so that I could remember the good feeling before things came crashing down again. Of course, I did not find time and of course, we are having one of those weeks when diabetes sucks even more than usual and I desperately wish I could get back that "feel good" feeling!
Taya had an appointment this morning. She was excited to go as she got her new meter and she has been really careful this past two weeks to be taking good blood sugars so we would have information to present to our educator. Well, we get the print off and it seems her pump has been malfunctioning on and off and we weren't aware of it. The printout had several rows of clocks- meaning the time was somehow off and so blood sugars and boluses didn't upload. The days that it did work were great, however. She only had two reading above 200 in the 5 days that showed up. Unfortunately her A1c was not great at all. She cried, I cried, the educator cried. I am so frustrated for her. It has always been harder for her to maintain a low A1c. She never has the drastic highs and lows of her sister, which to me should be a good thing- but she is just never able to get it down where we want it. We have tried monthly appointments, uploading every two weeks, various pump settings, on and on. We have not tried sensor because she does not want to be hooked up to one more thing. She is active in sports and I don't blame her at all. I just want to make it better for her. She recently did a research paper on T1 for English and while the complications seem light years away for her, she was made much more aware of how devastating they can be. When I leave appointments like that I am so angry. She is 15 years old and has been dealing with this for 11 years. I just want her to get a break somewhere, sometime. It makes me sad that a hug and a kiss won't take the pain of this away as if it were a skinned knee. She works so hard at school and sports and diabetes and just being a teenager. I tried to tell her that it's impossible to balance all the balls all of the time and she needs to be proud of the little things and we will keep working on the rest. But, I see her frustration, her anger and her sadness in her eyes. I so wish I could take it away. I don't think she has any idea how her real, genuine laugh brightens my day- mostly because it's such a rare thing.
Meanwhile, I got a call from TJ's school. His blood sugar is over 400. No rhyme or reason there. It was normal when he had breakfast and I sent venison jerky for morning snack so there was absolutely no reason for a spike. Got a call a few minutes ago and it is still over 300. Guess we will be doing a change and hoping that he is not getting sick. He told me the other day he would keep his diabetes if he could just get rid of Celiac. Most people who aren't aware of T1 believe that the diabetes would restrict his diet more than gluten. Not that I promote junk food, but how is he going to feel when he is 15 and can't even go through the McDonald's drive thru? You can always correct for carbs but you can't take the wheat out of a bun!
My friend posted something about it being easier to nail jello to a wall than manage diabetes. Yep, totally having one of those days. At times like this it is easy to let my mind wander to all the things that can happen. We are touring another college next week for Tenley. There comes another set of worries. Taking care of people with chronic illness is hard work and there are times I feel completely weighted down by it all. But, putting myself in their shoes I am so amazed at how they persevere. I can take a night off, they never can. And even in the mist of a bad day like today, I see their optimism. Tori wants to work in the medical field. She wants to make this better for others. It broke my heart when TJ came home the other day and asked me if Diabetes was a disability. I am not sure who told him such a thing but I wanted to kick their ass! He wants to teach his friends about T1 and Celiac and tell them that they all have special things about themselves. He is a bigger person than me! Tenley is ever hopeful in her view of the future that includes travel and big cities and adventure. The same friend told me today that there will be curve balls and we can't be perfect all the time. We just do our best. There is hope in that statement and I guess the bad comes with the good, right?
Oh, the good news from last week- insurance approved new pumps for the girls, Tylie and Taya were elected as officers for DECA (treasurer and VP respectively) and Taylor got elected to student council. I really am proud of my kids- all of them!
Taya had an appointment this morning. She was excited to go as she got her new meter and she has been really careful this past two weeks to be taking good blood sugars so we would have information to present to our educator. Well, we get the print off and it seems her pump has been malfunctioning on and off and we weren't aware of it. The printout had several rows of clocks- meaning the time was somehow off and so blood sugars and boluses didn't upload. The days that it did work were great, however. She only had two reading above 200 in the 5 days that showed up. Unfortunately her A1c was not great at all. She cried, I cried, the educator cried. I am so frustrated for her. It has always been harder for her to maintain a low A1c. She never has the drastic highs and lows of her sister, which to me should be a good thing- but she is just never able to get it down where we want it. We have tried monthly appointments, uploading every two weeks, various pump settings, on and on. We have not tried sensor because she does not want to be hooked up to one more thing. She is active in sports and I don't blame her at all. I just want to make it better for her. She recently did a research paper on T1 for English and while the complications seem light years away for her, she was made much more aware of how devastating they can be. When I leave appointments like that I am so angry. She is 15 years old and has been dealing with this for 11 years. I just want her to get a break somewhere, sometime. It makes me sad that a hug and a kiss won't take the pain of this away as if it were a skinned knee. She works so hard at school and sports and diabetes and just being a teenager. I tried to tell her that it's impossible to balance all the balls all of the time and she needs to be proud of the little things and we will keep working on the rest. But, I see her frustration, her anger and her sadness in her eyes. I so wish I could take it away. I don't think she has any idea how her real, genuine laugh brightens my day- mostly because it's such a rare thing.
Meanwhile, I got a call from TJ's school. His blood sugar is over 400. No rhyme or reason there. It was normal when he had breakfast and I sent venison jerky for morning snack so there was absolutely no reason for a spike. Got a call a few minutes ago and it is still over 300. Guess we will be doing a change and hoping that he is not getting sick. He told me the other day he would keep his diabetes if he could just get rid of Celiac. Most people who aren't aware of T1 believe that the diabetes would restrict his diet more than gluten. Not that I promote junk food, but how is he going to feel when he is 15 and can't even go through the McDonald's drive thru? You can always correct for carbs but you can't take the wheat out of a bun!
My friend posted something about it being easier to nail jello to a wall than manage diabetes. Yep, totally having one of those days. At times like this it is easy to let my mind wander to all the things that can happen. We are touring another college next week for Tenley. There comes another set of worries. Taking care of people with chronic illness is hard work and there are times I feel completely weighted down by it all. But, putting myself in their shoes I am so amazed at how they persevere. I can take a night off, they never can. And even in the mist of a bad day like today, I see their optimism. Tori wants to work in the medical field. She wants to make this better for others. It broke my heart when TJ came home the other day and asked me if Diabetes was a disability. I am not sure who told him such a thing but I wanted to kick their ass! He wants to teach his friends about T1 and Celiac and tell them that they all have special things about themselves. He is a bigger person than me! Tenley is ever hopeful in her view of the future that includes travel and big cities and adventure. The same friend told me today that there will be curve balls and we can't be perfect all the time. We just do our best. There is hope in that statement and I guess the bad comes with the good, right?
Oh, the good news from last week- insurance approved new pumps for the girls, Tylie and Taya were elected as officers for DECA (treasurer and VP respectively) and Taylor got elected to student council. I really am proud of my kids- all of them!
Monday, September 17, 2012
Earning our Money
Some weeks it is harder to be a parent than others. As my husband said, "We earned our money this week!"
Well, on the non-D front, Tessa decided skating was not her thing anymore. It wasn't an over night decision and she cried a lot of tears. She had actually started talking about it this summer, but we talked her into continuing since she had tried out for the team and others did not make it. I honestly thought once the program started going, she would be back on board. However, once school started, she also wanted to play volleyball. For the past few weeks she has been doing both, nearly every day of the week, plus school work. In order to continue skating, she would need to miss 6 games to attend synchro practices. This was the ultimate dilemma. I agree that she committed to her synchro team, but skating has become a year round sport. I think it is unfortunate that at age 12, she had to make such a choice- between games of the sport in season and practices of the winter sport. She felt pressure from both sides- not wanting to let either down. Had she not been able to say specifically why she wanted to quit, I think we would have made her stick it out. However, there is a fine line between forcing your child to do something and causing them to dislike it even more and allowing them to make a change they have considered carefully and let them deal with the consequences. The kicker was when I came home from a Synchro meeting. At the meeting, many of the girls had come even though it wasn't required. They were excited about everything the coach had to say- you could see it on their faces. Tessa used to look like that. When I got home and shared the information with her, she started to cry. That is pretty telling considering how excited she used to get about skating and competitions. After several hours of discussion between mom, dad, and Tessa, she felt pretty sure that quitting skating was what she wanted to do. She wrote her coach a note expressing her feelings. She originally planned to meet with her, but that didn't work out. I was also disappointed in some aspects of how her coach handled it. But, overall, there has been a definite change in mood for the better so it was probably a good decision.
Then there is the impact of technology. This has affects our lives everyday, but this week seemed to have an even greater impact, particularly for Tylie. First, I will just skim over an episode she had involving friends, former friends, text messages and Twitter. The handiness of having technology readily at your fingertips leads to some impulsive actions that in the end, hurt more people than just yourself. It is hard to explain to a child the art of patience in a fast paced world. Which leads me to our other problem- the insulin pump. The gift and the curse of technology according to Tylie. She is currently using a loaner pump as hers malfunctioned this summer and the warranty had expired. For insurance purposes, she needs to be checking her blood sugar consistently to demonstrate that she uses the pump and it is effective in her diabetes management in order for a new pump to be covered. At our appointment with the diabetes educator, Tylie stated she wanted to go back to shots. In her mind, she feels it will be easier. My heart hurts thinking of her returning to shots. I believe that she remembers them to be easier because it was her dad and I doing all the math, taking care of morning and bedtime, and much in between. She did not drive, or spontaneously go out to eat, or babysit. I don't believe she knows the impact and the time commitment required to be "good at" shots. Her main complaint is that she hates to be hooked up all the time to something. I really do get that as I can't imagine it myself. No matter how you look at it, diabetes is an inconvenience. There is nothing fun about it- especially if you are a teenager. I would give anything in the world to be able to give her and and her sister and brother even one day off from dealing with highs, lows, and set changes. But, the idea of her going off of the pump after it has allowed her to have less night time lows and stable A1c's for the past five years makes me physically sick. We had a good discussion during which I was impressed that she allowed me to say my peace and not snap at me. I told her that I was very proud of where she was at and acknowledged that many teenagers are in a much worse place than she is- and they don't have diabetes. I tried to express my fear without frightening her and to have her recognize the importance of the control being on the pump allowed her. We reached a compromise that she would do what she needed to do to get a new pump. If she wanted to take a "pump vacation" we would meet with the educator and set up a plan. That way, she could make an educated decision without losing the option of the pump. I know that it is her life and she is 17 years old. She will need to start making decisions on her own and since she is the one that lives with this on a daily basis I will need to respect that decision. There will come a time that we will just have to trust that we raised her with as much information as she could get, enough self-confidence that she can get through the tough teenage times, and enough strength to make the right choice, even though it isn't the easiest. I guess that last statement applies to more than just diabetes and more than just one child. Sigh...
I have to end on a humorous note, however. On Saturday, after this stressful week, I had lost my battle with the messy house which also resulted in me losing my temper. As a result, the kids were asked to do some tasks they dislike which lead to much disgruntled arguing with each other and complaining to me. This did nothing to ease my mood. I was talking to Troy and said, "This morning it felt like they were sucking the life right out of me!" He replied, "Fun suckers!" to which TJ chimed in, "Suckers! I want one!" Nothing like a little kid's innocent comment to relieve tension!
Well, on the non-D front, Tessa decided skating was not her thing anymore. It wasn't an over night decision and she cried a lot of tears. She had actually started talking about it this summer, but we talked her into continuing since she had tried out for the team and others did not make it. I honestly thought once the program started going, she would be back on board. However, once school started, she also wanted to play volleyball. For the past few weeks she has been doing both, nearly every day of the week, plus school work. In order to continue skating, she would need to miss 6 games to attend synchro practices. This was the ultimate dilemma. I agree that she committed to her synchro team, but skating has become a year round sport. I think it is unfortunate that at age 12, she had to make such a choice- between games of the sport in season and practices of the winter sport. She felt pressure from both sides- not wanting to let either down. Had she not been able to say specifically why she wanted to quit, I think we would have made her stick it out. However, there is a fine line between forcing your child to do something and causing them to dislike it even more and allowing them to make a change they have considered carefully and let them deal with the consequences. The kicker was when I came home from a Synchro meeting. At the meeting, many of the girls had come even though it wasn't required. They were excited about everything the coach had to say- you could see it on their faces. Tessa used to look like that. When I got home and shared the information with her, she started to cry. That is pretty telling considering how excited she used to get about skating and competitions. After several hours of discussion between mom, dad, and Tessa, she felt pretty sure that quitting skating was what she wanted to do. She wrote her coach a note expressing her feelings. She originally planned to meet with her, but that didn't work out. I was also disappointed in some aspects of how her coach handled it. But, overall, there has been a definite change in mood for the better so it was probably a good decision.
Then there is the impact of technology. This has affects our lives everyday, but this week seemed to have an even greater impact, particularly for Tylie. First, I will just skim over an episode she had involving friends, former friends, text messages and Twitter. The handiness of having technology readily at your fingertips leads to some impulsive actions that in the end, hurt more people than just yourself. It is hard to explain to a child the art of patience in a fast paced world. Which leads me to our other problem- the insulin pump. The gift and the curse of technology according to Tylie. She is currently using a loaner pump as hers malfunctioned this summer and the warranty had expired. For insurance purposes, she needs to be checking her blood sugar consistently to demonstrate that she uses the pump and it is effective in her diabetes management in order for a new pump to be covered. At our appointment with the diabetes educator, Tylie stated she wanted to go back to shots. In her mind, she feels it will be easier. My heart hurts thinking of her returning to shots. I believe that she remembers them to be easier because it was her dad and I doing all the math, taking care of morning and bedtime, and much in between. She did not drive, or spontaneously go out to eat, or babysit. I don't believe she knows the impact and the time commitment required to be "good at" shots. Her main complaint is that she hates to be hooked up all the time to something. I really do get that as I can't imagine it myself. No matter how you look at it, diabetes is an inconvenience. There is nothing fun about it- especially if you are a teenager. I would give anything in the world to be able to give her and and her sister and brother even one day off from dealing with highs, lows, and set changes. But, the idea of her going off of the pump after it has allowed her to have less night time lows and stable A1c's for the past five years makes me physically sick. We had a good discussion during which I was impressed that she allowed me to say my peace and not snap at me. I told her that I was very proud of where she was at and acknowledged that many teenagers are in a much worse place than she is- and they don't have diabetes. I tried to express my fear without frightening her and to have her recognize the importance of the control being on the pump allowed her. We reached a compromise that she would do what she needed to do to get a new pump. If she wanted to take a "pump vacation" we would meet with the educator and set up a plan. That way, she could make an educated decision without losing the option of the pump. I know that it is her life and she is 17 years old. She will need to start making decisions on her own and since she is the one that lives with this on a daily basis I will need to respect that decision. There will come a time that we will just have to trust that we raised her with as much information as she could get, enough self-confidence that she can get through the tough teenage times, and enough strength to make the right choice, even though it isn't the easiest. I guess that last statement applies to more than just diabetes and more than just one child. Sigh...
I have to end on a humorous note, however. On Saturday, after this stressful week, I had lost my battle with the messy house which also resulted in me losing my temper. As a result, the kids were asked to do some tasks they dislike which lead to much disgruntled arguing with each other and complaining to me. This did nothing to ease my mood. I was talking to Troy and said, "This morning it felt like they were sucking the life right out of me!" He replied, "Fun suckers!" to which TJ chimed in, "Suckers! I want one!" Nothing like a little kid's innocent comment to relieve tension!
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