Merry Christmas and Happy Holidays to all the families, our kindred spirits, living with Type 1 diabetes.
It is a good time to reflect and give thanks.
I am so thankful for family and friends who support us.
As time goes on I realize how important it is to have people who knew us, and Jessica, "before." We are so thankful you have stood by us, and continue to love and support us.
But, I am also thankful to have met and become friends with those that met us "after," yet still accept us with all of our crazy nutrition label counting and crankiness after sleepless nights.
I am so incredibly thankful for Ellie, Jessica's health care provider. She is absolutely the best, and although it was quite a journey to find her, it was worth every step. Every family living with type 1 deserves someone just like her.
Thank you to the people and companies who have developed glucometers that give an answer in a few short seconds. I still hate the callouses on my daughter's fingers, and she hates how "long" it takes. But, we both know this technology has come so far.
Thank you to Animas. Yes, I am naming a brand! We love your pump, your customer service, and your colors! Thank you for realizing that water proof pumps and meter remotes are a super big deal to kiddos, and to their parents. And, thank you for replacing hers when it broke! We are especially grateful to your vacation loaner program as it saved us on a recent trip to Colorado when Jess's pump made a strange R2D2 sound and then shut off (such a good reminder to download your settings regularly!). And, please get your new pump/CGM from Europe over to the USA!
Thank you to the JDRF! You are such a worthy organization. You give us a cause. You provide us with hope. We know how lucky we are to have a disease for which there is such a powerful group advocating and dedicated to finding a cure. We have raised over $14,000 for the JDRF in two years and will continue to do our part!
Thank you to all of those who have contributed to Team Jessica. This has been such a huge source of support to us. We have been amazed and humbled by your generosity.
Thank you to fellow bloggers. You make us realize we are not alone in this journey. You are our kindred spirits and we learn so much from you.
Thank you to our health insurance company. We may have a huge deductible, and our health care bills take a large part of our income, but we have insulin, strips, and pumps, and access to health care. We never forget that so many can not say this.
Thank you to Banting, Best, Macleod and Collip--you saved my husband's life, and now my daughter's. We are forever thankful for your discovery of insulin. It may not be a cure, but there is no doubt it is life support.
Thank you to all the others I am forgetting, and I am sure there are many. We know how fortunate we are, and we appreciate it.
Wishing everyone a very Merry Christmas/Happy Holidays. And, how could I not end with one wish? A cure. Santa, all I want is a cure. I will patiently wait until you can put that in my stocking!
Saturday, December 24, 2011
Sunday, December 11, 2011
Teamwork
We've been incredibly lucky that for the first two years since diagnosis, Jessica has been shockingly compliant. I knew it would not always be so, although I hoped that it would. And, seriously...who really can be completely compliant when managing any medical condition? I've been in practice, and on this earth long enough to know compliance is really a myth. We can try our best to do "the right thing," but long term it is a hard reality. And, so most of us try to focus on "good enough." Diabetes is perhaps the ultimate compliance tester. Who can truly measure and count the carbs in every morsel of food they eat? I can speak from experience that "good enough" has to be the rule.
The problem is that lately I don't even think we are at good enough.
For the past month Jessica's numbers have been completely out of control. Her mood has matched her numbers, making it even harder to try to get things back on track. She's been irritable and frustrated. She has also entered the age of refusing to wear her dexcom (more sleepless nights for mom and dad), hating how her pump looks, and hating being different. More days than not when I pick her up she has had whatever random treat was brought into class that day, and either not bolused for it, or guessed at the carbs. There have also been a paucity of blood sugar checks. All of this has made it incredibly challenging to figure out what basal or I:C ratio needs to be adjusted. She is tired of being high and has repeatedly asked for her rates to be changed. I have felt like throwing my hands up in the air and screaming "Do you want me to randomly pick a rate to change???" In short, things have not been good, and we have not been on the same team.
I am so tired of the whole thing, and I can't imagine how she feels. It is such a relentless, exhausting disease. And, I have a hard time coming up with one that is as emotionally charged in the guilt factor. We eat fast food due to no time and I feel guilty. Jess has the class treat and I see her guilt when she tells me. I hate the ridiculously unhealthy relationship with food that diabetes fosters. Yes, she is overall eating healthier because of diabetes, but I hate that she feels guilty about having the treats all the other kids have. And, of course I am left wondering why the heck are our kids having so many treats???? But, I digress.
I have tried to talk with Jessica and it hasn't gone far. Tonight was different, although I am not altogether sure why. She checked her blood sugar and it was 298. For whatever reason, this time she started crying and said "I am so sick of being high." This led to a deluge of information from there. She hates diabetes (I knew that), the longer she has it, the more she is doubting a cure will come. She is tired of taking care of her diabetes and doesn't want to do it anymore, but yet knows she has to. She is reading a book in school where the character loses a toe, and has not been able to stop thinking about her losing her own toes. She's tired of being high. She's tired of feeling cranky. And, the list went on and on as I just sat and held her.
We've reached a road not yet traveled. My little girl that I can truly take care of is no where to be found. Instead there is this tween who is making her own decisions, yet obviously still needs my help. But, the help is different. She no longer wants me to write out her meal plan. She will no longer let me tell her what to eat. She wants to make her own decisions. And, that is completely reasonable. She's also scared, yet doesn't admit this to me like she used to. She thinks she now knows more about diabetes..."you have no idea what this is like..." and she is somewhat right. She does know more about some aspects. I will never truly understand what it is like to be the person living with this. For as completely exhausted as I am (I swear I have aged ten years in the two since she has been diagnosed), I can not imagine how exhausted she is.
Tonight I realized that although I have always tried to let her take ownership, and have tried hard to teach her instead of telling her, I need to do more. She's great at reading nutrition labels, but when a cake or brownie comes into the classroom this doesn't help her. So, we got back out the carb food flashcards we haven't done together in over a year. We went through them together and both guessed and made it a game to see who was right. She asked if we could do it again soon. I told her about an online carb counting class she could take, and she was thrilled. She wants to learn more, and I know that knowledge will only help. We haven't focused lately on keeping her diabetes education growing, and I realized tonight that we need to do that now.
I know the seas won't be smooth sailing, but for the first time in awhile I felt like we were a team again tonight.
The problem is that lately I don't even think we are at good enough.
For the past month Jessica's numbers have been completely out of control. Her mood has matched her numbers, making it even harder to try to get things back on track. She's been irritable and frustrated. She has also entered the age of refusing to wear her dexcom (more sleepless nights for mom and dad), hating how her pump looks, and hating being different. More days than not when I pick her up she has had whatever random treat was brought into class that day, and either not bolused for it, or guessed at the carbs. There have also been a paucity of blood sugar checks. All of this has made it incredibly challenging to figure out what basal or I:C ratio needs to be adjusted. She is tired of being high and has repeatedly asked for her rates to be changed. I have felt like throwing my hands up in the air and screaming "Do you want me to randomly pick a rate to change???" In short, things have not been good, and we have not been on the same team.
I am so tired of the whole thing, and I can't imagine how she feels. It is such a relentless, exhausting disease. And, I have a hard time coming up with one that is as emotionally charged in the guilt factor. We eat fast food due to no time and I feel guilty. Jess has the class treat and I see her guilt when she tells me. I hate the ridiculously unhealthy relationship with food that diabetes fosters. Yes, she is overall eating healthier because of diabetes, but I hate that she feels guilty about having the treats all the other kids have. And, of course I am left wondering why the heck are our kids having so many treats???? But, I digress.
I have tried to talk with Jessica and it hasn't gone far. Tonight was different, although I am not altogether sure why. She checked her blood sugar and it was 298. For whatever reason, this time she started crying and said "I am so sick of being high." This led to a deluge of information from there. She hates diabetes (I knew that), the longer she has it, the more she is doubting a cure will come. She is tired of taking care of her diabetes and doesn't want to do it anymore, but yet knows she has to. She is reading a book in school where the character loses a toe, and has not been able to stop thinking about her losing her own toes. She's tired of being high. She's tired of feeling cranky. And, the list went on and on as I just sat and held her.
We've reached a road not yet traveled. My little girl that I can truly take care of is no where to be found. Instead there is this tween who is making her own decisions, yet obviously still needs my help. But, the help is different. She no longer wants me to write out her meal plan. She will no longer let me tell her what to eat. She wants to make her own decisions. And, that is completely reasonable. She's also scared, yet doesn't admit this to me like she used to. She thinks she now knows more about diabetes..."you have no idea what this is like..." and she is somewhat right. She does know more about some aspects. I will never truly understand what it is like to be the person living with this. For as completely exhausted as I am (I swear I have aged ten years in the two since she has been diagnosed), I can not imagine how exhausted she is.
Tonight I realized that although I have always tried to let her take ownership, and have tried hard to teach her instead of telling her, I need to do more. She's great at reading nutrition labels, but when a cake or brownie comes into the classroom this doesn't help her. So, we got back out the carb food flashcards we haven't done together in over a year. We went through them together and both guessed and made it a game to see who was right. She asked if we could do it again soon. I told her about an online carb counting class she could take, and she was thrilled. She wants to learn more, and I know that knowledge will only help. We haven't focused lately on keeping her diabetes education growing, and I realized tonight that we need to do that now.
I know the seas won't be smooth sailing, but for the first time in awhile I felt like we were a team again tonight.
Wednesday, October 5, 2011
Two Years
Two years ago Friday. This is an anniversary that will never be joyful or fun. It is the day that stole my seven year old's carefree childhood. It is a day that has forever changed not only her, but our whole family. I try to be the optimist that I usually am and turn it into a celebration of Jessica's good health. I am so proud of so many things.
I am so proud of Jessica--words can never express the awe I have for her. Every day there are so many examples of how she has not let diabetes win. I watch her excel at school, on the soccer field, at piano. I watch as she decides that "Taking Diabetes to School" really isn't the best thing to read to your fourth grade class, and she designs her own power point presentation instead. I laugh as she shows me the slide of Grumpy, the Snow White dwarf, that she made to describe to the class how she feels when her blood sugar is high. I watch as, on her own, she approaches her principal to ask to make an announcement to the whole school about a JDRF fundraiser that we are having. And then I watch as she practices over and over what she is going to say in front of these 600+ people. I am, quite simply, amazed by her. There are bad days. There are days when she hates diabetes. There are days when she is 300 and starving and simply cannot handle the thought of another string cheese or meat. There are days when she tells me "I just want a break, I can't believe I am going to have this the rest of my life." Yet she is resilient.
I am so proud of Courtney, Jessica's sister. She is truly the unsung hero. She looks after Jessica when I can't, even though I have told her again and again that it is not her job--she is only a child and should never feel responsible for Jessica. But, she does not waver. Her pancreas works, yet our whole family lives as though ours do not. She stands by as Jessica gets the bulk of our attention. As much as we try to balance this, site changes, counting carbs, and all the many diabetes tasks take a huge amount of time. She worries she too will get diabetes, yet tells me "mom, I see how well you and daddy take care of Jessica, so I know it would be ok, you would take care of me too." She cheers Jessica up when she is down. She takes Jessica into the world of make believe where diabetes is forgotten. I am forever thankful not that Jessica has a twin, but that she has Courtney as a twin.
I am so proud of my husband. As hard as this is for me, I can only imagine that in some ways it is harder for him. He intimately knows what Jessica's future holds. He has been doing it 22 years. One of the saddest things he ever told me was that he has stopped believing there will be a cure. When he was first diagnosed they told him five years, then it was ten. It simply got too painful to keep hoping. I know it breaks his heart that Jessica has this now too. Yet, he has tried so hard to make sure she never feels alone. When she wanted a pump, he got one first to lead the way for her. He puts up with all the insensitive comments about "Oh, you have it too, I guess that is why Jessica has diabetes." People don't mean to be insensitive; what that comment really means is "Thank God my child will likely not get this...her dad has it so that is why this has happened to her." But, I am sure it hurts. He is a pillar of strength and I cannot imagine going through this journey without him. He is my best friend, soul mate, and biggest source of support.
I am so proud of myself. I have managed to balance this with work and all my other responsibilities. This is hands down the hardest thing I have ever done. Med school, residency with twins? A cake walk compared to this. Those things had an end. Med school ended. After working 36 hours as a resident, the shift ended and a short rest could be taken. Infant twins grew up and learned to sleep through the night. Diabetes has no end. It is a 24/7 job. And, as her mom, there are so many emotions that go along with it. When Jessica tells me "I hate diabetes" she dumps it and walks away...it is I that am left with tears in my eyes and filled with guilt that she must live with this. And, the bigger guilt is that she is the one that must live with it the rest of her life. She will grow up, and although I will always worry and try to help her, in the end it is her disease and she must carry it. I hope I am teaching her the tools she will need. I hope that I am instilling in her that there will always be a Team Jessica. I hope I am teaching her to celebrate little victories and to never forget the sheer joy there is to be found in life.
I have learned many things these two years. It is hard to believe it has only been two years. So much of life feels as though it passes "in the blink of an eye." This does not. It has been a very long two years.
As with most crises in life, support wanes with time. Yet, in doing so, it also has shown us the rocks in our life. We are so thankful for those that have continued to support us and carry this burden with us. Our good friends who continue to reach out and ask how we are, who have learned about diabetes with us. I am forever thankful to my mom and dad who have walked every step of this journey with us.
And, I have learned I must try to deal with my disappointments and anger. People are only human after all, and they mean no harm. But, I am tired of explaining the difference between Type 1 and Type 2. No, Jessica can not take pills. No, she did not get this solely because her dad has it. No, she did not used to be fat. No, she is not able to get rid of it like your Aunt did. No, it is not easy now that she is on the pump. It is easier, but why don't you try taking her home for a couple of days and see how "easy" it is? No, we do not need to "loosen up" and not be so anal with this disease. Highs and lows feel like shit, and DKA is always looming in the distance...only a mere four hours or so away. Long term complications rarely cross our mind, yet they are there too. Yes, Jessica CAN eat anything. No, you are not being helpful by getting her a sugar-free cake, or serving only carb-free food. She needs carbs to live, just like you or I. I wish I could just post a sticky note on her that says "If I want it then I have to know the carbs in it." Yes, she CAN have candy----it is labeled with the carbs!
In so many ways things are better. We have an amazing diabetes provider for Jessica, which has made such a huge difference. Our way of life for us is mostly our new normal. None of us like it, but we do it and it is easier now. Counting carbs, site changes, highs lows....they are still so unpleasant, but we are used to them. We are closer as a family then we ever were before Jessica was diagnosed. Diabetes has led us to many new people and inspirational children. It has shown us our true friends. Diabetes has made Jessica stronger, more resilient, and healthier. It has taught us to celebrate the little victories, to never give up.
Two years. I still wait for the day that we can celebrate the anniversaries of how long it has been SINCE Jessica has had diabetes. Scientists--I'm counting on you.
I am so proud of Jessica--words can never express the awe I have for her. Every day there are so many examples of how she has not let diabetes win. I watch her excel at school, on the soccer field, at piano. I watch as she decides that "Taking Diabetes to School" really isn't the best thing to read to your fourth grade class, and she designs her own power point presentation instead. I laugh as she shows me the slide of Grumpy, the Snow White dwarf, that she made to describe to the class how she feels when her blood sugar is high. I watch as, on her own, she approaches her principal to ask to make an announcement to the whole school about a JDRF fundraiser that we are having. And then I watch as she practices over and over what she is going to say in front of these 600+ people. I am, quite simply, amazed by her. There are bad days. There are days when she hates diabetes. There are days when she is 300 and starving and simply cannot handle the thought of another string cheese or meat. There are days when she tells me "I just want a break, I can't believe I am going to have this the rest of my life." Yet she is resilient.
I am so proud of Courtney, Jessica's sister. She is truly the unsung hero. She looks after Jessica when I can't, even though I have told her again and again that it is not her job--she is only a child and should never feel responsible for Jessica. But, she does not waver. Her pancreas works, yet our whole family lives as though ours do not. She stands by as Jessica gets the bulk of our attention. As much as we try to balance this, site changes, counting carbs, and all the many diabetes tasks take a huge amount of time. She worries she too will get diabetes, yet tells me "mom, I see how well you and daddy take care of Jessica, so I know it would be ok, you would take care of me too." She cheers Jessica up when she is down. She takes Jessica into the world of make believe where diabetes is forgotten. I am forever thankful not that Jessica has a twin, but that she has Courtney as a twin.
I am so proud of my husband. As hard as this is for me, I can only imagine that in some ways it is harder for him. He intimately knows what Jessica's future holds. He has been doing it 22 years. One of the saddest things he ever told me was that he has stopped believing there will be a cure. When he was first diagnosed they told him five years, then it was ten. It simply got too painful to keep hoping. I know it breaks his heart that Jessica has this now too. Yet, he has tried so hard to make sure she never feels alone. When she wanted a pump, he got one first to lead the way for her. He puts up with all the insensitive comments about "Oh, you have it too, I guess that is why Jessica has diabetes." People don't mean to be insensitive; what that comment really means is "Thank God my child will likely not get this...her dad has it so that is why this has happened to her." But, I am sure it hurts. He is a pillar of strength and I cannot imagine going through this journey without him. He is my best friend, soul mate, and biggest source of support.
I am so proud of myself. I have managed to balance this with work and all my other responsibilities. This is hands down the hardest thing I have ever done. Med school, residency with twins? A cake walk compared to this. Those things had an end. Med school ended. After working 36 hours as a resident, the shift ended and a short rest could be taken. Infant twins grew up and learned to sleep through the night. Diabetes has no end. It is a 24/7 job. And, as her mom, there are so many emotions that go along with it. When Jessica tells me "I hate diabetes" she dumps it and walks away...it is I that am left with tears in my eyes and filled with guilt that she must live with this. And, the bigger guilt is that she is the one that must live with it the rest of her life. She will grow up, and although I will always worry and try to help her, in the end it is her disease and she must carry it. I hope I am teaching her the tools she will need. I hope that I am instilling in her that there will always be a Team Jessica. I hope I am teaching her to celebrate little victories and to never forget the sheer joy there is to be found in life.
I have learned many things these two years. It is hard to believe it has only been two years. So much of life feels as though it passes "in the blink of an eye." This does not. It has been a very long two years.
As with most crises in life, support wanes with time. Yet, in doing so, it also has shown us the rocks in our life. We are so thankful for those that have continued to support us and carry this burden with us. Our good friends who continue to reach out and ask how we are, who have learned about diabetes with us. I am forever thankful to my mom and dad who have walked every step of this journey with us.
And, I have learned I must try to deal with my disappointments and anger. People are only human after all, and they mean no harm. But, I am tired of explaining the difference between Type 1 and Type 2. No, Jessica can not take pills. No, she did not get this solely because her dad has it. No, she did not used to be fat. No, she is not able to get rid of it like your Aunt did. No, it is not easy now that she is on the pump. It is easier, but why don't you try taking her home for a couple of days and see how "easy" it is? No, we do not need to "loosen up" and not be so anal with this disease. Highs and lows feel like shit, and DKA is always looming in the distance...only a mere four hours or so away. Long term complications rarely cross our mind, yet they are there too. Yes, Jessica CAN eat anything. No, you are not being helpful by getting her a sugar-free cake, or serving only carb-free food. She needs carbs to live, just like you or I. I wish I could just post a sticky note on her that says "If I want it then I have to know the carbs in it." Yes, she CAN have candy----it is labeled with the carbs!
In so many ways things are better. We have an amazing diabetes provider for Jessica, which has made such a huge difference. Our way of life for us is mostly our new normal. None of us like it, but we do it and it is easier now. Counting carbs, site changes, highs lows....they are still so unpleasant, but we are used to them. We are closer as a family then we ever were before Jessica was diagnosed. Diabetes has led us to many new people and inspirational children. It has shown us our true friends. Diabetes has made Jessica stronger, more resilient, and healthier. It has taught us to celebrate the little victories, to never give up.
Two years. I still wait for the day that we can celebrate the anniversaries of how long it has been SINCE Jessica has had diabetes. Scientists--I'm counting on you.
Friday, July 15, 2011
Reflections
Jessica turned nine a week ago. She has not even been diagnosed two years. She told me last night that she does not remember not having diabetes. Her twin sister concurred that she also does not remember the years that Jessica did not have diabetes. I knew this time would come. As her mom I can't help but be sad. You see, to me, there were seven years-the majority of her life- when we lived carefree days. It saddens me to know that she no longer remembers days without multiple finger sticks, counting carbs, adjusting basal rates, site changes, and dexcom beeps. But, then I take a step back. She is happy. She is thriving. She is so incredibly healthy. This is who she is. Diabetes has made her stronger, healthier, responsible, more resilient...it has become so much an integral part of her, that I am not even sure I would recognize the little girl prior to diagnosis anymore. I would love to go back and somehow magically avoid that horrid October day. But yet, I would never want to change who Jessica has become. Perhaps this is just one more step towards acceptance.
Life has become easier. The pain has dulled. Counting carbs is almost routine, although I have developed an intense hate for cooking whereas I once loved it. My wild a*s guesses are getting better. Jessica is getting better and better with site changes. She is so independent it blows my mind. We are not running to her camps at noon every day this summer to give an insulin shot. She is checking herself and self-managing with her pump. She has less "I hate diabetes days." I have less "I hate diabetes days." Diabetes has brought our little unit of four closer together than I could have imagined. I still hate the worry and sleep deprivation, but it has become normal and expected instead of disabling.
We are eagerly looking forward to our diabetes family support weekend again in August. Seeing old friends, and meeting new. For two and a half days being immersed by people who walk it, live it, get it. Learning tips and new information. And, reflecting on how far we have come in a year. Thanks to that weekend Jessica has a pump and a new care team- it changed our life.
Diabetes-I still hate you. I still will do all I can to find a cure and rid you from our life and so many others. I will fight you every step of the way. I will not allow you to take my husband or daughter from me. But, I also finally accept you.
Life has become easier. The pain has dulled. Counting carbs is almost routine, although I have developed an intense hate for cooking whereas I once loved it. My wild a*s guesses are getting better. Jessica is getting better and better with site changes. She is so independent it blows my mind. We are not running to her camps at noon every day this summer to give an insulin shot. She is checking herself and self-managing with her pump. She has less "I hate diabetes days." I have less "I hate diabetes days." Diabetes has brought our little unit of four closer together than I could have imagined. I still hate the worry and sleep deprivation, but it has become normal and expected instead of disabling.
We are eagerly looking forward to our diabetes family support weekend again in August. Seeing old friends, and meeting new. For two and a half days being immersed by people who walk it, live it, get it. Learning tips and new information. And, reflecting on how far we have come in a year. Thanks to that weekend Jessica has a pump and a new care team- it changed our life.
Diabetes-I still hate you. I still will do all I can to find a cure and rid you from our life and so many others. I will fight you every step of the way. I will not allow you to take my husband or daughter from me. But, I also finally accept you.
Monday, June 6, 2011
You gotta be kidding me!
International Food Festival at school! Hurray....not! And, my day went something like this....
Jess wakes with a great blood sugar....121...yeah, we are off to a good start!
Feed Jess an early, low carb breakfast to try to make sure we start the food festival in range.
Arrive at school at 9 am and check Jess's blood sugar in preparation to bolus for the numerous chocolate cakes, cookies, pies, and all the other desserts claiming to be representing different countries. Jess, ironically, had Thailand and on her own decided to bring a Thai Beef Waterfall Salad. I warned her it was unlikely to be popular, but she loves salad and was insistent. I receive many odd looks from the other parents as I carry in my salad, amongst their gooey, high carb, mounds of sugar.
Jess's sugar...351....WHAT???????? How the h*ll did that happen????? You gotta be kidding me!!!! I measured every carb of her breakfast on the scale. Once again, a reminder of how little control we have. Best guess...spiking as she was so excited about the Food Festival and it being the last week of school. But, who the heck knows. I have an I hate diabetes moment.
Panicked look from Jess. "Do I not get to participate?" There is no way I am going to make my kid sit there and watch all the other kids stuff their faces with candy and cookies in front of her. "Yes, of course you get to participate." Me...dreading how this is going to work out.
There is no way to count the carbs. They are sweets I have never even heard of from countries around the world. Jess piles her plate high and I take a huge WAG (Wild A*s guess for those not in the know) and bolus her for 100 grams. In retrospect, maybe not the best decision.
Jess gets stuffed. Her blood sugar is 260 and she still has over 2 units on board and her ISF is 1:200 (I know crazy ISF for 1 1/2 years s/p diagnosis, but it is what it is.) Crap, I think. Jess calmly replies "mom, it's high fat, it just hasn't absorbed yet. Don't panic." Is she really 8??? Could she be right??? I hold off giving her juice and skittles, and decide to hang out at school and recheck in a bit.
I spend the morning as a third grader. It is a heck of a lot more fun than my job! I went to library, recess, and learned about where pizza came from. But, the biggest thing I learned, is that somewhere in this past year and a half, my daughter has learned a heck of a lot. We rechecked several times. She never got low. She was clearly right and the high fat had delayed the absorption of carbs. Before lunch I check one finally time...148. Wow. Will you be able to eat your whole lunch I ask? Jessica replies, I'll save the ham and cheese for last, and if I'm full I'll leave those....they're free you know, mom. You can go mom, thanks for taking care of me.
I didn't. You took care of yourself. Amazing child. My hero.
Jess wakes with a great blood sugar....121...yeah, we are off to a good start!
Feed Jess an early, low carb breakfast to try to make sure we start the food festival in range.
Arrive at school at 9 am and check Jess's blood sugar in preparation to bolus for the numerous chocolate cakes, cookies, pies, and all the other desserts claiming to be representing different countries. Jess, ironically, had Thailand and on her own decided to bring a Thai Beef Waterfall Salad. I warned her it was unlikely to be popular, but she loves salad and was insistent. I receive many odd looks from the other parents as I carry in my salad, amongst their gooey, high carb, mounds of sugar.
Jess's sugar...351....WHAT???????? How the h*ll did that happen????? You gotta be kidding me!!!! I measured every carb of her breakfast on the scale. Once again, a reminder of how little control we have. Best guess...spiking as she was so excited about the Food Festival and it being the last week of school. But, who the heck knows. I have an I hate diabetes moment.
Panicked look from Jess. "Do I not get to participate?" There is no way I am going to make my kid sit there and watch all the other kids stuff their faces with candy and cookies in front of her. "Yes, of course you get to participate." Me...dreading how this is going to work out.
There is no way to count the carbs. They are sweets I have never even heard of from countries around the world. Jess piles her plate high and I take a huge WAG (Wild A*s guess for those not in the know) and bolus her for 100 grams. In retrospect, maybe not the best decision.
Jess gets stuffed. Her blood sugar is 260 and she still has over 2 units on board and her ISF is 1:200 (I know crazy ISF for 1 1/2 years s/p diagnosis, but it is what it is.) Crap, I think. Jess calmly replies "mom, it's high fat, it just hasn't absorbed yet. Don't panic." Is she really 8??? Could she be right??? I hold off giving her juice and skittles, and decide to hang out at school and recheck in a bit.
I spend the morning as a third grader. It is a heck of a lot more fun than my job! I went to library, recess, and learned about where pizza came from. But, the biggest thing I learned, is that somewhere in this past year and a half, my daughter has learned a heck of a lot. We rechecked several times. She never got low. She was clearly right and the high fat had delayed the absorption of carbs. Before lunch I check one finally time...148. Wow. Will you be able to eat your whole lunch I ask? Jessica replies, I'll save the ham and cheese for last, and if I'm full I'll leave those....they're free you know, mom. You can go mom, thanks for taking care of me.
I didn't. You took care of yourself. Amazing child. My hero.
Tuesday, May 10, 2011
Someday...
Someday, I hope I can look back and feel I did my best and that it was good enough. So much of my emotional well being is tied up in Jessica's blood sugars. I stay sane by getting so much support from the other parents of CWDs I know- both in person and online. I know I am not alone, even though it often feels like I am. I know all of us temporary pancreases judge ourselves at times by the numbers. Jess's last visit I was on cloud nine- best HgbA1c we've had in months. And then bang. Just like that the numbers went crazy the very next day. There was no rhyme or reason. Someday, I hope I learn that its not my fault or my failure that causes this craziness in her numbers. Everything is still so fresh and new that I still have this crazy idea I can control this disease. I am slowly learning sometimes the numbers have a mind of their own.
Someday, I hope I can look back at Jessica's early childhood and not wonder if I did something wrong. Should I not have let her drink so much of the chocolate milk she loved? Should I have found options so that she wasn't in daycare? Should I have breastfed longer? Would any of it made any difference?
Someday, I hope I can stop the occasional thought of Courtney getting T1 from entering my mind. It enters less now than when Jess was first diagnosed. But, yet every so often when I am least expecting it, the thought arrives.
Someday, I hope I can learn to live in the moment and not fear the future so much. I hope I can learn to trust that Jessica will turn out to be the emotionally and physically healthy adult that I am trying so hard to raise.
Someday, I hope I can stop waiting for those in my life that just don't get it to suddenly understand.
Someday, I hope I hear that a cure has been found.
Someday, I hope I can look back at pictures before Jessica was diagnosed and not wonder..."did she have it then?"
Someday, I hope I can be as happy as I was before she was diagnosed.
Someday, I hope I can have a break...just a short break...from the 24/7 I have been living since Jess was diagnosed. Yet, somehow I know when that break comes it may not truly be a break. How can I forget Jess must always live with this? How can I truly trust that another temporary pancreas will be as diligent as I am.
Someday, I hope I can not feel a knife through my heart when Jessica says "I hate diabetes." I realize this is just her way of coping, and I'm glad she can express it. I hate diabetes too, but to hear her say it causes me such pain. Someday, I hope I learn to just let it bounce off me.
Someday, I hope I have the time to get as involved in the JDRF advocacy avenues as I want to.
Today, I am so thankful to have two beautiful daughters, who for some reason see through all of my faults, and still look at me with stars in their eyes.
Today, I am so thankful to have the most wonderful husband in the world. He provides endless support and comfort to me. This month marks the 22nd year he has been living with Type 1. He has weathered it so admirably, and serves as such an amazing role model for my daughter.
Today, I am so thankful to have the most amazing friends I could ever imagine.
Today, I am so thankful to have a mother who has learned all she can about counting carbs. A mother that although she herself is deadly scared of needles, has learned to check my daughter's blood sugar. A mother that has been an endless source of support to me since my daughter's diagnosis. A mother that says "I know honey...I know," and really does.
Today, I am thankful to have a dad I can always count on. A dad that has come with no notice to watch my sick children, even if it meant canceling his own important work functions. A dad that has never once made me feel guilty about his helping, but instead has told me "I consider it an opportunity." A dad that has approached things in such a unique way with my CWD...teaching her to look at the scientific side of getting a pump and making it seem so fascinating to her little mind. A dad that makes sure that if my husband can't come with me to my daughter's diabetes appointments, he is there so I am not alone.
Today, I am thankful for Courtney, my T1 daughter's twin sister. I am thankful that she allows Jess to just be Jess. She doesn't see her as a diabetic or different, but as a best friend and playmate. She takes care of her when she needs it. She looks out for her when I can't be there. But, most importantly she allows her to just escape. Escape to the land of make believe where diabetes can not enter. I am thankful for the grace with which she has handled the relative lack of attention she has received since Jessica's diagnosis. She is an amazing human being and I am so incredibly proud of her.
Today, I am thankful for Jessica's diabetes care provider. She is such a source of knowledge, support, and advocacy. She has truly made such a difference in all of our lives.
Today, I am thankful for how far I have come. It has been one year and seven months since that dark day. I have survived. I have grown. I have learned so much. I have found joy. I have comforted others. I have become a better doctor in many ways. I have become a better wife.
Tomorrow is full of possibilities.
Someday, I hope I can look back at Jessica's early childhood and not wonder if I did something wrong. Should I not have let her drink so much of the chocolate milk she loved? Should I have found options so that she wasn't in daycare? Should I have breastfed longer? Would any of it made any difference?
Someday, I hope I can stop the occasional thought of Courtney getting T1 from entering my mind. It enters less now than when Jess was first diagnosed. But, yet every so often when I am least expecting it, the thought arrives.
Someday, I hope I can learn to live in the moment and not fear the future so much. I hope I can learn to trust that Jessica will turn out to be the emotionally and physically healthy adult that I am trying so hard to raise.
Someday, I hope I can stop waiting for those in my life that just don't get it to suddenly understand.
Someday, I hope I hear that a cure has been found.
Someday, I hope I can look back at pictures before Jessica was diagnosed and not wonder..."did she have it then?"
Someday, I hope I can be as happy as I was before she was diagnosed.
Someday, I hope I can have a break...just a short break...from the 24/7 I have been living since Jess was diagnosed. Yet, somehow I know when that break comes it may not truly be a break. How can I forget Jess must always live with this? How can I truly trust that another temporary pancreas will be as diligent as I am.
Someday, I hope I can not feel a knife through my heart when Jessica says "I hate diabetes." I realize this is just her way of coping, and I'm glad she can express it. I hate diabetes too, but to hear her say it causes me such pain. Someday, I hope I learn to just let it bounce off me.
Someday, I hope I have the time to get as involved in the JDRF advocacy avenues as I want to.
Today, I am so thankful to have two beautiful daughters, who for some reason see through all of my faults, and still look at me with stars in their eyes.
Today, I am so thankful to have the most wonderful husband in the world. He provides endless support and comfort to me. This month marks the 22nd year he has been living with Type 1. He has weathered it so admirably, and serves as such an amazing role model for my daughter.
Today, I am so thankful to have the most amazing friends I could ever imagine.
Today, I am so thankful to have a mother who has learned all she can about counting carbs. A mother that although she herself is deadly scared of needles, has learned to check my daughter's blood sugar. A mother that has been an endless source of support to me since my daughter's diagnosis. A mother that says "I know honey...I know," and really does.
Today, I am thankful to have a dad I can always count on. A dad that has come with no notice to watch my sick children, even if it meant canceling his own important work functions. A dad that has never once made me feel guilty about his helping, but instead has told me "I consider it an opportunity." A dad that has approached things in such a unique way with my CWD...teaching her to look at the scientific side of getting a pump and making it seem so fascinating to her little mind. A dad that makes sure that if my husband can't come with me to my daughter's diabetes appointments, he is there so I am not alone.
Today, I am thankful for Courtney, my T1 daughter's twin sister. I am thankful that she allows Jess to just be Jess. She doesn't see her as a diabetic or different, but as a best friend and playmate. She takes care of her when she needs it. She looks out for her when I can't be there. But, most importantly she allows her to just escape. Escape to the land of make believe where diabetes can not enter. I am thankful for the grace with which she has handled the relative lack of attention she has received since Jessica's diagnosis. She is an amazing human being and I am so incredibly proud of her.
Today, I am thankful for Jessica's diabetes care provider. She is such a source of knowledge, support, and advocacy. She has truly made such a difference in all of our lives.
Today, I am thankful for how far I have come. It has been one year and seven months since that dark day. I have survived. I have grown. I have learned so much. I have found joy. I have comforted others. I have become a better doctor in many ways. I have become a better wife.
Tomorrow is full of possibilities.
Thursday, April 21, 2011
The Dexcom Arrives!
Jessica decided she wanted a Dexcom. Although I was not crazy about the idea (the kid is going to get a hernia with all the crap she carries on her small body!), it is her disease and I told her it was her decision. She is only 8, but from the time she was diagnosed I have tried to let it be her disease. I have told her that I will always be part of Team Jessica, but she is the most important member of the team.
She amazes me and I am in awe of her. She also makes me feel like a wuss. I may have dissected cadavers, but I truly don't know if I could do what she does. She is such a champ with the site changes with their scary spring loaded sound. And, now to add to that, she is choosing to have one more piece of equipment injected into her body. I guess if you are worried you will die in your sleep having things attached and inside you is the better option. It breaks my heart that she, at 8 years old, fears dying in her sleep, but I am also glad she can voice this. It also makes me feel I have failed her. I have been walking around in a sleep deprived daze since she was diagnosed due to checking on her, but yet she still has this fear. It is just one more reminder that I can't carry this burden for her and I can't make it go away. It is just one more reminder of how angry I am this was dealt to my little girl, and to so many others.
Her healthcare team thinks the Dexcom is the answer, and I think they are probably right. But, seriously the kid has the lowest BMI of any kid I know, so we just don't have a lot of real estate to work with! Anyone who has or cares for someone with T1 can imagine what real estate we are having to use, and it has changed what position she sleeps in and how she sits. But, she has not complained once. And, for the first time in a long time she isn't fighting us about going to bed. Hmmm...
The compromise her amazing provider came up with is that Jess will wear the transmitter at night and on weekends, but not carry it to school. For those of you that haven't seen it---the thing is humungous! I mean really...we have iPhones that do everything imaginable and they are barely bigger than it! I know, I know...technology takes time....a smaller one will come soon. But, when you have this little girl with all these gadgets attached you can't help but wish it would come now. And, there are babies waiting, and toddlers waiting. But I digress...
So, it came in the mail today (she had been using my husbands up until now) and she is thrilled. She wishes it came in purple, but she is thrilled. I am thrilled she has an absolutely amazing provider who listens to her and advocates for her. It was Jessica's decision. And, although others may disagree I think it should have been.
She amazes me and I am in awe of her. She also makes me feel like a wuss. I may have dissected cadavers, but I truly don't know if I could do what she does. She is such a champ with the site changes with their scary spring loaded sound. And, now to add to that, she is choosing to have one more piece of equipment injected into her body. I guess if you are worried you will die in your sleep having things attached and inside you is the better option. It breaks my heart that she, at 8 years old, fears dying in her sleep, but I am also glad she can voice this. It also makes me feel I have failed her. I have been walking around in a sleep deprived daze since she was diagnosed due to checking on her, but yet she still has this fear. It is just one more reminder that I can't carry this burden for her and I can't make it go away. It is just one more reminder of how angry I am this was dealt to my little girl, and to so many others.
Her healthcare team thinks the Dexcom is the answer, and I think they are probably right. But, seriously the kid has the lowest BMI of any kid I know, so we just don't have a lot of real estate to work with! Anyone who has or cares for someone with T1 can imagine what real estate we are having to use, and it has changed what position she sleeps in and how she sits. But, she has not complained once. And, for the first time in a long time she isn't fighting us about going to bed. Hmmm...
The compromise her amazing provider came up with is that Jess will wear the transmitter at night and on weekends, but not carry it to school. For those of you that haven't seen it---the thing is humungous! I mean really...we have iPhones that do everything imaginable and they are barely bigger than it! I know, I know...technology takes time....a smaller one will come soon. But, when you have this little girl with all these gadgets attached you can't help but wish it would come now. And, there are babies waiting, and toddlers waiting. But I digress...
So, it came in the mail today (she had been using my husbands up until now) and she is thrilled. She wishes it came in purple, but she is thrilled. I am thrilled she has an absolutely amazing provider who listens to her and advocates for her. It was Jessica's decision. And, although others may disagree I think it should have been.
Wednesday, April 20, 2011
The Role of the Caretaker
A recent post on another blog really sent my wheels turning, and some of the comments I found down right disturbing. Do caretakers of T1's or any disease for that matter deserve to air their feelings? I am a Family Doc. I was trained, and I believe that illness affects not only the patient, but the family, and the community at large. Everyone's experience is unique and deserves to be recognized. Illness is not a competition. The caretaker does not know what it feels like to have the chronic disease, but the person with the chronic disease doesn't know what it feels like to be the caretaker either. One can say that it is harder to have cancer or diabetes or a number of illnesses, but that doesn't mean that it is not hard to love someone with them. How do we measure pain and suffering? To experience pain is to know it, but who is anyone to judge the pain that someone else is feeling? No, I thankfully don't know what it feels like to be high or low, but I do know what it feels like to worry my daughter or husband will die in their sleep of hypoglycemia. How can we put a label on pain and suffering? How is a caretaker "whining" anymore than a person with a chronic disease is "whining?" And, doesn't everyone deserve the right to whine once in awhile? Clearly it is a healthier coping mechanism than running away or drinking to deal with the pain. The parent who has lost a child to cancer doesn't know what it feels like to have or die of cancer, but does that mean they didn't experience as much pain? This world is too full of judgement. If people actually focused their energy on supporting each other instead of competing and judging each other think about what we could accomplish. Pain should not be judged or measured. It just exists.
Thursday, March 24, 2011
Traveling "Light"
I have come to the conclusion that once you are diagnosed with Type 1 diabetes you are no longer able to travel light. Of course I base this on being the mom to a Type 1 kiddo and being married to one. But, let's face it...who really does the "packing" in life. If we represent most families I'd have to go with the answer: "The MOM!"
As we have traveled along life's road over the past not quite 1 and 1/2 years since Jess was diagnosed, and specifically in the four months since we have been lucky enough to have insulin pumps, I feel like I have gone back to the days with infant twins. Gone is the milestone we had finally arrived at where we could just throw a few things in the car and be off for the day. Wherever we travel these days, backpacks, coolers, and supplies follow. Now, anyone who knows me knows that I am the true girl scout who tries to "always be prepared." So, I am not saying everyone should or does live the way I do. But, needless to say I think most Type 1's would agree---there is a lot of sh*t to travel with!
Example A: Jess started at a new school. Courtney started at a new school as well. We got Courtney a few school supplies, gave her a kiss on the forehead and wished her luck. For Jessica, we met with the nurse. We met with the teacher. We talked with the principle. We met with the cafeteria manager. We made up a sub form with a picture of Jess and all of her information in case there was an unexpected substitute teacher, we made sure the bus driver knew she had Type 1 and could eat on the bus, we wrote a letter to the parents of her classmates asking (begging?) them to let us know when snacks would be coming into the classroom so that Jess could know the carb information and participate. We spent hours researching the carb information for school lunch items. We helped Jess pick out snacks to have in the classroom in case the dreaded treats came in without carb information. We printed out information for her teacher explaining what Type 1 diabetes is (as in it is not Type 2 diabetes...why do they even have the same name???). And, seriously...the list went on and on. It certainly felt like a heavy load to conquer. And, Jess arrives at school every day carrying the heaver burden on managing it day by day on her own at the young age of 8. And, did I mention the bag she must carry???
Example B: Packing for a trip with Type 1 diabetes. And, I thought this was hard...
Example C: Packing for a trip with Type 1 diabetes and two people on pumps. Seriously...this is crazy. Each time you hope the plane has enough room for all the carry-on bags one must have for all of their supplies: Insulin vials and syringes, alcohol pads, spare pumps, spare cartridges, spare sites, meter, strips, batteries, lancets, ketone meter, ketone strips, sweets for lows, snacks, sick day guidelines, travel letter, EMLA cream, and I'm sure I'm forgetting something! Not to mention the fact that apparently the pumps can't go through the xray machines, so each time I must prepare my 8 year old very shy daughter that there may be a pat down.
I could give examples D-Z, but the point is all the same. The balance is in carrying the heavy load while maintaining the enjoyment of life and the freedom and care-free days of childhood. I am thankful I can do this for Jessica now. Traveling through life may not be as uninhibited and joyful as it once was for her, but I am still able to do the bulk of the "packing" for her. I dread the day when she realizes the full burden of this disease. My hope is that by then we will have repeatedly taught her that diabetes can not stop her. It may take asking how she will do something, but she can still do it.
But, I have to admit sometimes I just have big time "I hate diabetes days." Today is one of them. We need a cure. I will borrow from my true idol Kerri Sparling's website and remind people "just because these children don't look sick does not mean they don't deserve a cure." Insulin and pumps are life saving miracles, but they are not a cure. Together we must all work hard to advocate and fund raise. And, until then I remain ever thankful for those in my life that "get it."
As we have traveled along life's road over the past not quite 1 and 1/2 years since Jess was diagnosed, and specifically in the four months since we have been lucky enough to have insulin pumps, I feel like I have gone back to the days with infant twins. Gone is the milestone we had finally arrived at where we could just throw a few things in the car and be off for the day. Wherever we travel these days, backpacks, coolers, and supplies follow. Now, anyone who knows me knows that I am the true girl scout who tries to "always be prepared." So, I am not saying everyone should or does live the way I do. But, needless to say I think most Type 1's would agree---there is a lot of sh*t to travel with!
Example A: Jess started at a new school. Courtney started at a new school as well. We got Courtney a few school supplies, gave her a kiss on the forehead and wished her luck. For Jessica, we met with the nurse. We met with the teacher. We talked with the principle. We met with the cafeteria manager. We made up a sub form with a picture of Jess and all of her information in case there was an unexpected substitute teacher, we made sure the bus driver knew she had Type 1 and could eat on the bus, we wrote a letter to the parents of her classmates asking (begging?) them to let us know when snacks would be coming into the classroom so that Jess could know the carb information and participate. We spent hours researching the carb information for school lunch items. We helped Jess pick out snacks to have in the classroom in case the dreaded treats came in without carb information. We printed out information for her teacher explaining what Type 1 diabetes is (as in it is not Type 2 diabetes...why do they even have the same name???). And, seriously...the list went on and on. It certainly felt like a heavy load to conquer. And, Jess arrives at school every day carrying the heaver burden on managing it day by day on her own at the young age of 8. And, did I mention the bag she must carry???
Example B: Packing for a trip with Type 1 diabetes. And, I thought this was hard...
Example C: Packing for a trip with Type 1 diabetes and two people on pumps. Seriously...this is crazy. Each time you hope the plane has enough room for all the carry-on bags one must have for all of their supplies: Insulin vials and syringes, alcohol pads, spare pumps, spare cartridges, spare sites, meter, strips, batteries, lancets, ketone meter, ketone strips, sweets for lows, snacks, sick day guidelines, travel letter, EMLA cream, and I'm sure I'm forgetting something! Not to mention the fact that apparently the pumps can't go through the xray machines, so each time I must prepare my 8 year old very shy daughter that there may be a pat down.
I could give examples D-Z, but the point is all the same. The balance is in carrying the heavy load while maintaining the enjoyment of life and the freedom and care-free days of childhood. I am thankful I can do this for Jessica now. Traveling through life may not be as uninhibited and joyful as it once was for her, but I am still able to do the bulk of the "packing" for her. I dread the day when she realizes the full burden of this disease. My hope is that by then we will have repeatedly taught her that diabetes can not stop her. It may take asking how she will do something, but she can still do it.
But, I have to admit sometimes I just have big time "I hate diabetes days." Today is one of them. We need a cure. I will borrow from my true idol Kerri Sparling's website and remind people "just because these children don't look sick does not mean they don't deserve a cure." Insulin and pumps are life saving miracles, but they are not a cure. Together we must all work hard to advocate and fund raise. And, until then I remain ever thankful for those in my life that "get it."
Monday, March 14, 2011
I Don't Have All The Answers...Or Any Of Them
Parenting is often a fine balance. Am I supposed to just listen or offer advice? Should I problem solve or let my child come up with the answer? Parenting a child with diabetes is more of the same, but the questions can be so much more heart wrenching.
Jessica: "I hate carrying this bag." This bag is her fanny pack with her meter, glucagon, skittles for lows...it is to me her lifeline. It is what her dad and I spent sleepless nights wondering if she would be allowed to carry at her new school. Thankfully, she is and therefore can test in the classroom, and treat her lows. To us, it was a huge relief she would be allowed to carry it. To her it is heavy and I suspect a daily reminder that out of all of her classmates, it is her pancreas that decided on an early retirement.
Me: Wondering to myself how to address this..."I know honey, I wish you didn't have to carry it either." Translation- I wish your pancreas worked so that you wouldn't have to carry it, and test, and measure your food, and....
Jessica: "I hate diabetes."
Me: Easy one. "I hate diabetes too."
Jessica: "Am I really going to have this forever?"
Me: Heart breaking. "Until there's a cure...and until then I am here to help you and be part of Team Jessica." I struggle so much with this question. I strongly believe you can never take away a patient's hope. Sometimes that is all there is left. But, my husband said something so discouraging to me recently. I asked him why he did not enter his information into Trial Net. Didn't he want to be in studies that could lead to a cure? He told me that when he was first diagnosed with Type 1 he used to hope and wait for the cure. He's had it 22 years now. At first he was told there would be a cure in 5 years. Five years came and went. Then 10...he said that it is just to painful to get his hopes up. He just needs to focus on the present. I don't think he thinks a cure is coming in his lifetime. That broke my heart, and made me wonder if I am doing the right thing by giving Jessica hope that a cure will come. I remember our JDRF walk. She was seven. We got done walking and Jessica said "we finished the walk and raised over $7000 for the scientists...now is there a cure?" I hated explaining to her that it wasn't as simple as her seven year old brain thought it could be. I can't give up hope for a cure, and I know it is probably just as much for my survival as hers that I keep believing in one. The scientist in me thinks it is possible, the mom in me needs it to be.
Jessica: "Why did I get this?" I am sure the translation that she will not speak aloud is "Why did my twin sister not?"
Me: "We don't know, but it is nothing you did or anybody did." As, I silently pray...please don't let her twin sister get it too. I can't fathom the thought.
And, my favorite...
Jessica: "Why doesn't daddy have to measure that, but I do?"
Me: Struggling here. The truth...because I only have such a precious short time while you will still listen to me, and I know it. Because I spend every moment trying to give you the skills and teach you what you need to know to live a long, healthy life. Because I saw a Type 1 in the office today with retinopathy, neuropathy, and so many complications that I almost burst into tears. I so desperately want to try to force you to be the most compliant Type 1 that ever lived, because the thought of having to watch you develop complications, and slowly but surely fall into ill health is enough to shatter my heart into a million pieces. The thought that you may die before I do has entered my mind more than once, and no matter how much I want to keep it out, it is there. And, in my mind the only thing I can do to prevent it is to teach you, and give you the tools to manage this horrible, unrelenting disease. I wish your dad would measure everything, but he has lived with this 22 years and done a pretty darn good job of managing it. So, instead "Daddy should measure it, but he has gotten pretty good at guessing."
Every day there are so many questions. Questions that an eight year old shouldn't have to ask. And there are statements. "Mom, I am worried I will get low and die in my sleep." No matter how many times I reassure her that her Dad and I check her and keep her safe, the worry persists. It breaks my heart that a child even has these thoughts. Yet, this is not a disease that could be kept from her. And, it is not a disease that should be. She needs to know the facts to manage it and take control of it herself.
And, she has grown so much. I don't think I would recognize the little girl she was before she was diagnosed. She has matured years beyond her age. She has learned so much, and I like to think she has grown so much more self confident. She knows what she does on a daily basis compared to other kids her age, and I think she feels a sense of pride as well. She is the healthiest little eater I know. As her mom, I am amazingly proud of her. I may not have all the answers, and she has a never ending supply of questions, but I love that she feels safe enough to come to me with them. My hope is she always will.
Jessica: "I hate carrying this bag." This bag is her fanny pack with her meter, glucagon, skittles for lows...it is to me her lifeline. It is what her dad and I spent sleepless nights wondering if she would be allowed to carry at her new school. Thankfully, she is and therefore can test in the classroom, and treat her lows. To us, it was a huge relief she would be allowed to carry it. To her it is heavy and I suspect a daily reminder that out of all of her classmates, it is her pancreas that decided on an early retirement.
Me: Wondering to myself how to address this..."I know honey, I wish you didn't have to carry it either." Translation- I wish your pancreas worked so that you wouldn't have to carry it, and test, and measure your food, and....
Jessica: "I hate diabetes."
Me: Easy one. "I hate diabetes too."
Jessica: "Am I really going to have this forever?"
Me: Heart breaking. "Until there's a cure...and until then I am here to help you and be part of Team Jessica." I struggle so much with this question. I strongly believe you can never take away a patient's hope. Sometimes that is all there is left. But, my husband said something so discouraging to me recently. I asked him why he did not enter his information into Trial Net. Didn't he want to be in studies that could lead to a cure? He told me that when he was first diagnosed with Type 1 he used to hope and wait for the cure. He's had it 22 years now. At first he was told there would be a cure in 5 years. Five years came and went. Then 10...he said that it is just to painful to get his hopes up. He just needs to focus on the present. I don't think he thinks a cure is coming in his lifetime. That broke my heart, and made me wonder if I am doing the right thing by giving Jessica hope that a cure will come. I remember our JDRF walk. She was seven. We got done walking and Jessica said "we finished the walk and raised over $7000 for the scientists...now is there a cure?" I hated explaining to her that it wasn't as simple as her seven year old brain thought it could be. I can't give up hope for a cure, and I know it is probably just as much for my survival as hers that I keep believing in one. The scientist in me thinks it is possible, the mom in me needs it to be.
Jessica: "Why did I get this?" I am sure the translation that she will not speak aloud is "Why did my twin sister not?"
Me: "We don't know, but it is nothing you did or anybody did." As, I silently pray...please don't let her twin sister get it too. I can't fathom the thought.
And, my favorite...
Jessica: "Why doesn't daddy have to measure that, but I do?"
Me: Struggling here. The truth...because I only have such a precious short time while you will still listen to me, and I know it. Because I spend every moment trying to give you the skills and teach you what you need to know to live a long, healthy life. Because I saw a Type 1 in the office today with retinopathy, neuropathy, and so many complications that I almost burst into tears. I so desperately want to try to force you to be the most compliant Type 1 that ever lived, because the thought of having to watch you develop complications, and slowly but surely fall into ill health is enough to shatter my heart into a million pieces. The thought that you may die before I do has entered my mind more than once, and no matter how much I want to keep it out, it is there. And, in my mind the only thing I can do to prevent it is to teach you, and give you the tools to manage this horrible, unrelenting disease. I wish your dad would measure everything, but he has lived with this 22 years and done a pretty darn good job of managing it. So, instead "Daddy should measure it, but he has gotten pretty good at guessing."
Every day there are so many questions. Questions that an eight year old shouldn't have to ask. And there are statements. "Mom, I am worried I will get low and die in my sleep." No matter how many times I reassure her that her Dad and I check her and keep her safe, the worry persists. It breaks my heart that a child even has these thoughts. Yet, this is not a disease that could be kept from her. And, it is not a disease that should be. She needs to know the facts to manage it and take control of it herself.
And, she has grown so much. I don't think I would recognize the little girl she was before she was diagnosed. She has matured years beyond her age. She has learned so much, and I like to think she has grown so much more self confident. She knows what she does on a daily basis compared to other kids her age, and I think she feels a sense of pride as well. She is the healthiest little eater I know. As her mom, I am amazingly proud of her. I may not have all the answers, and she has a never ending supply of questions, but I love that she feels safe enough to come to me with them. My hope is she always will.
Friday, February 4, 2011
Confessions of a Caregiver
Sometimes I sneak to the garage and eat Skittles -- they are for my daughter's lows and the only candy in the house. Other times I have wondered "why me?" But, most of the time I am so incredibly thankful.
Before the year 1922, insulin did not exist. Back then, I would not have had the chance to meet and fall in love with my wonderful husband, a Type 1 diabetic. I would have been forced to watch my beautiful, sweet 7-year old daughter slowly die before my eyes, as a result of her own Type 1 diabetes.
I remind myself of this multiple times a week as I spend hours meal planning, grocery shopping, preparing food, checking blood sugars, changing sites, empathizing with my T1 daughter that having diabetes stinks, trying to spend adequate time with my non-T1 daughter, communicating multiple times a day with the school nurse... all while working as a Family Physician which is in fact my paying job.
I have discovered being the caregiver is a fine balance between nagging, enabling, and empowering. I'm not sure I've got it quite right yet. And, having an almost 40-year old and an 8-year old to care for are two very different things.
The 40-year old has been diagnosed since right before he turned 18. He is an inspiration. He finished med school, became a family doc as well and is an amazing husband and dad. But, he's not always an amazing diabetic. And, who could blame him, really? I truly cannot imagine what it feels like to have a pancreas that doesn't work. As hard as my job is, I get breaks. I can sneak the Skittles in the garage without having to worry about all the short and long term effects if I don't dose the insulin just right. He can't, and maybe denial is the coping mechanism that is only natural. And, so he has me reminding him "that always makes you high... did you check your blood sugar? Are you high? Are you low?" It must be exhausting to him... it is to me. But, diabetes doesn't take a break. It is there 24/7. And, I love him and want to grow old with him and so I nag.
I try to empower and support, and at times I clearly enable. And, I get frustrated at times. I make him a lunch... the carbs are clearly labeled on the bag... and then I find him snacking after lunch with handfuls of chips. What was the point, I wonder? He's going to be high anyhow now. Why did I bother to measure the lunch? I might as well have just sent him with a big scoop of pasta and label it "take your best guess!" At times I feel angry. At times I feel scared. But, I continue day by day trying to be as supportive and helpful as I can, all the while trying not to drive him nuts with my nagging.
But, then on October 7, 2009 my sweet 7-year old baby girl was diagnosed. She has a fraternal twin, my only other child who thankfully does not have it (yet?). What a different playing field. Initially she needed me to do everything, all while my heart was broken and my world shattered. I held her down screaming while I gave those first shots. I had to -- I would not let diabetes win. I told her "no" more times than I could ever count that first year. No, you can't have chocolate milk. No, you can't have a brownie Oh, and by the way, diabetes can't stop you... you can still do anything. But, you can't have that chocolate cake that the other kids are eating. In case you haven't guessed my T1 daughter is a HUGE chocoholic.
As instructed I kept her on the rigid prescribed carbs with every meal. I became the food police in ways I had never, ever been with my husband. I had to re-learn to shop, re-learn what to feed my daughter, forget what it felt like to get 7-8 hours of solid sleep. Instead of enjoying her school plays, I sat paralyzed in the audience. What if she gets low? I couldn't help but have times I looked at my friends -- why me? But, then I would realize it truly is why not me?
We all have our life story. Perhaps this was always meant to be mine. I am a caretaker at heart. I chose a healing profession as I love to help people and encourage them to take care of themselves. I wasn't dissuaded in the least when I found out my now husband had Type 1. We'll deal with it, was my attitude. I always worried that my children might get Type 1. The odds are so small, but I worried. I remember beginning to read Cheating Destiny and being unable to continue when he described his son's diagnosis. But, one random day in October my daughter was thirstier than she had ever been, and a new phase in our journey began.
And, now there are two of us with working pancreases and two without. Some days I look at my non-T1 daughter and wonder: is it starting? Has the process already begun? Will I soon be the only member of my family without T1?
But, none of us know our destinies. I do know I will rise to the occasion. I will handle it. I will take care of my family, working pancreases or not. I'm a mom. That's what we do.
Before the year 1922, insulin did not exist. Back then, I would not have had the chance to meet and fall in love with my wonderful husband, a Type 1 diabetic. I would have been forced to watch my beautiful, sweet 7-year old daughter slowly die before my eyes, as a result of her own Type 1 diabetes.
I remind myself of this multiple times a week as I spend hours meal planning, grocery shopping, preparing food, checking blood sugars, changing sites, empathizing with my T1 daughter that having diabetes stinks, trying to spend adequate time with my non-T1 daughter, communicating multiple times a day with the school nurse... all while working as a Family Physician which is in fact my paying job.
I have discovered being the caregiver is a fine balance between nagging, enabling, and empowering. I'm not sure I've got it quite right yet. And, having an almost 40-year old and an 8-year old to care for are two very different things.
The 40-year old has been diagnosed since right before he turned 18. He is an inspiration. He finished med school, became a family doc as well and is an amazing husband and dad. But, he's not always an amazing diabetic. And, who could blame him, really? I truly cannot imagine what it feels like to have a pancreas that doesn't work. As hard as my job is, I get breaks. I can sneak the Skittles in the garage without having to worry about all the short and long term effects if I don't dose the insulin just right. He can't, and maybe denial is the coping mechanism that is only natural. And, so he has me reminding him "that always makes you high... did you check your blood sugar? Are you high? Are you low?" It must be exhausting to him... it is to me. But, diabetes doesn't take a break. It is there 24/7. And, I love him and want to grow old with him and so I nag.
I try to empower and support, and at times I clearly enable. And, I get frustrated at times. I make him a lunch... the carbs are clearly labeled on the bag... and then I find him snacking after lunch with handfuls of chips. What was the point, I wonder? He's going to be high anyhow now. Why did I bother to measure the lunch? I might as well have just sent him with a big scoop of pasta and label it "take your best guess!" At times I feel angry. At times I feel scared. But, I continue day by day trying to be as supportive and helpful as I can, all the while trying not to drive him nuts with my nagging.
But, then on October 7, 2009 my sweet 7-year old baby girl was diagnosed. She has a fraternal twin, my only other child who thankfully does not have it (yet?). What a different playing field. Initially she needed me to do everything, all while my heart was broken and my world shattered. I held her down screaming while I gave those first shots. I had to -- I would not let diabetes win. I told her "no" more times than I could ever count that first year. No, you can't have chocolate milk. No, you can't have a brownie Oh, and by the way, diabetes can't stop you... you can still do anything. But, you can't have that chocolate cake that the other kids are eating. In case you haven't guessed my T1 daughter is a HUGE chocoholic.
As instructed I kept her on the rigid prescribed carbs with every meal. I became the food police in ways I had never, ever been with my husband. I had to re-learn to shop, re-learn what to feed my daughter, forget what it felt like to get 7-8 hours of solid sleep. Instead of enjoying her school plays, I sat paralyzed in the audience. What if she gets low? I couldn't help but have times I looked at my friends -- why me? But, then I would realize it truly is why not me?
We all have our life story. Perhaps this was always meant to be mine. I am a caretaker at heart. I chose a healing profession as I love to help people and encourage them to take care of themselves. I wasn't dissuaded in the least when I found out my now husband had Type 1. We'll deal with it, was my attitude. I always worried that my children might get Type 1. The odds are so small, but I worried. I remember beginning to read Cheating Destiny and being unable to continue when he described his son's diagnosis. But, one random day in October my daughter was thirstier than she had ever been, and a new phase in our journey began.
And, now there are two of us with working pancreases and two without. Some days I look at my non-T1 daughter and wonder: is it starting? Has the process already begun? Will I soon be the only member of my family without T1?
But, none of us know our destinies. I do know I will rise to the occasion. I will handle it. I will take care of my family, working pancreases or not. I'm a mom. That's what we do.
Wednesday, January 26, 2011
Lessons Learned
So, along this diabetes journey I have learned so much about my daughter. Throughout her life we have tried to protect her, as most parents do their children. I remember right before she was diagnosed with Type 1 we had called every pharmacy within 2 hours looking for flumist (the nasal flu vaccine) so that she would not have to undergo the flu shot. You see, unlike her sister, she has always had such fear and panic over medical encounters, and especially shots. I remember feeling the irony when just a few weeks later she was diagnosed with a condition that would require four shots daily. Kids are programmed so differently, and I have been blessed enough to have one daughter who allowed her forehead to be stitched up without anesthesia and who laughs when she gets a flu shot, to her sister who reacts as I've already described. I say that I have been blessed because it has taught me so much empathy as a physician. I have often listened as staff have talked with disgust of the child that must be held down for shots, or who panics when he needs even a rapid strep. Oh, I think to myself...they don't have one of those children. I do, and since I also have her fraternal twin who has been raised exactly the same way and yet handles things so differently, I appreciate the genetic differences between children. And, perhaps just as importantly I also appreciate the stress and embarrassment their parents feel when they take them to the doctor. We have tried many different ways to handle her fears throughout her life, and thus have spent a great deal of time trying to protect her from those situations she fears so much.
What it took diabetes to teach me was that she is actually the bravest little girl I know. Behind that veil of terror and panic is a child made of steel. A child who is not afraid to be different, a child who has stood up to mean accusations as to why she has diabetes, a child who checks her blood sugar 10-14 times a day (which is more than any of my adult patients), a child who gave herself 4 shots a day, and a child who tonight inserted her own site and did every step of a site change at the young age of 8.
But, she doesn't always look brave, and it took diabetes to teach me how to help her realize how brave she is. I remember back to when she was first diagnosed. She would cry and beg us not to give her the shots. She then came up with this routine where she would count to 100, then tap her fingers all before we could give her the shot. All the while she would be shaking and sweating. A good friend reminded me at that time that I should be happy she had found a way to cope. This was good advice, but what I didn't realize until recently was that allowing her to do those things was actually the worst thing we could have done. What I have learned about Jessica is that for her the "before" is so much worse than the "after." She is a child who is consumed by fear so much so that she visibly shakes and sweats, but when the experience she is so afraid of is done she immediately is relieved and moves on without a look back.
We spent weeks trying to compassionately help Jessica give herself her first shot. She was so close so many times...her little hand shaking as she tried so hard to do it. Many times I reassured her that it was ok she wasn't ready, only to watch her try over and over night after night. How surprised I was when we went to a family support weekend and one of the counselors watched Jessica trying and then assertively, forcibly told her "Put it in!, just put it in!" I watched with shock as she did it. It was then that I realized for the first time that perhaps the kind, gentle approach I had always taken with Jessica was not actually helping her at all.
Tonight, for the first time she announced "I want to do a site change." I don't know what sparked this decision, and I have to admit I was definitely more than a little nervous as our pump trainer had told us the average age kids attempt this is around 12. But, I was not about to dissuade this interest. I led her through step by step all the preparatory steps and she did amazing. Then the time came to actually insert the set. We have the spring loaded sets, and I have to admit they even make me a little nervous with their quick and somewhat loud insertions. Jessica panicked and cried and begged me not to make her go through with it. But, I have learned. I saw through the tears and the pleas and realized that what she needed was not for me to tell her it was ok, and we could try again later. What she needed was for me to tell her that she is braver than she realizes, and that she can do it, and that she would do it. I did not back down, and even though it killed me to hear her cry and plead, I told her assertively that she would do it, and as I told her "push the button now!" she did it! I don't know if she was more surprised or I when we realized she had done it. She looked at her site with such pride and such relief. She proudly called her grandparents, and she instructed me to tell her diabetes care provider as she was just so proud of herself.
Thanks to diabetes and the lessons learned, we did not go through weeks of watching her suffer as she tried so hard to insert her own site. She did it the first night. I wouldn't know my daughter so well if not for diabetes. And, I don't think she would know herself so well either. I remember when I first met my husband I was so surprised when he told me that diabetes was his biggest strength. I didn't fully understand then, and maybe I still don't, but I think I am closer to understanding. I wish with all of my being that Jessica had not been given this burden of diabetes. Type 1 is a relentless, unforgiving disease. But, I can also see that it too might end up being her biggest strength.
What it took diabetes to teach me was that she is actually the bravest little girl I know. Behind that veil of terror and panic is a child made of steel. A child who is not afraid to be different, a child who has stood up to mean accusations as to why she has diabetes, a child who checks her blood sugar 10-14 times a day (which is more than any of my adult patients), a child who gave herself 4 shots a day, and a child who tonight inserted her own site and did every step of a site change at the young age of 8.
But, she doesn't always look brave, and it took diabetes to teach me how to help her realize how brave she is. I remember back to when she was first diagnosed. She would cry and beg us not to give her the shots. She then came up with this routine where she would count to 100, then tap her fingers all before we could give her the shot. All the while she would be shaking and sweating. A good friend reminded me at that time that I should be happy she had found a way to cope. This was good advice, but what I didn't realize until recently was that allowing her to do those things was actually the worst thing we could have done. What I have learned about Jessica is that for her the "before" is so much worse than the "after." She is a child who is consumed by fear so much so that she visibly shakes and sweats, but when the experience she is so afraid of is done she immediately is relieved and moves on without a look back.
We spent weeks trying to compassionately help Jessica give herself her first shot. She was so close so many times...her little hand shaking as she tried so hard to do it. Many times I reassured her that it was ok she wasn't ready, only to watch her try over and over night after night. How surprised I was when we went to a family support weekend and one of the counselors watched Jessica trying and then assertively, forcibly told her "Put it in!, just put it in!" I watched with shock as she did it. It was then that I realized for the first time that perhaps the kind, gentle approach I had always taken with Jessica was not actually helping her at all.
Tonight, for the first time she announced "I want to do a site change." I don't know what sparked this decision, and I have to admit I was definitely more than a little nervous as our pump trainer had told us the average age kids attempt this is around 12. But, I was not about to dissuade this interest. I led her through step by step all the preparatory steps and she did amazing. Then the time came to actually insert the set. We have the spring loaded sets, and I have to admit they even make me a little nervous with their quick and somewhat loud insertions. Jessica panicked and cried and begged me not to make her go through with it. But, I have learned. I saw through the tears and the pleas and realized that what she needed was not for me to tell her it was ok, and we could try again later. What she needed was for me to tell her that she is braver than she realizes, and that she can do it, and that she would do it. I did not back down, and even though it killed me to hear her cry and plead, I told her assertively that she would do it, and as I told her "push the button now!" she did it! I don't know if she was more surprised or I when we realized she had done it. She looked at her site with such pride and such relief. She proudly called her grandparents, and she instructed me to tell her diabetes care provider as she was just so proud of herself.
Thanks to diabetes and the lessons learned, we did not go through weeks of watching her suffer as she tried so hard to insert her own site. She did it the first night. I wouldn't know my daughter so well if not for diabetes. And, I don't think she would know herself so well either. I remember when I first met my husband I was so surprised when he told me that diabetes was his biggest strength. I didn't fully understand then, and maybe I still don't, but I think I am closer to understanding. I wish with all of my being that Jessica had not been given this burden of diabetes. Type 1 is a relentless, unforgiving disease. But, I can also see that it too might end up being her biggest strength.
Wednesday, January 5, 2011
A New Start
Time has flown and I have not emotionally been in a place where I could write. We went through a very rough fall and learned some very big lessons. This summer we had the huge gift of attending a Family Support Weekend for families living with diabetes. It was an amazing, life changing experience. While we were there we couldn't help but notice pumps, pumps, and more pumps! In fact, it seemed that every child with diabetes except our own was on a pump. The weekend was filled with wonderful classes, and deep bonds were created. We left the weekend with a new deep understanding of how much better Jessica's life and our own lives could be on pump therapy. The other wonderful thing that happened was I realized that while I had always thought Jessica wearing a pump would bother me I no longer was afraid it would. I met so many beautiful, happy, healthy children with their cute pump packs, spy belts, and big silly grins. I realized that I didn't see the pumps, but instead their big personalities and heroism. I had always been worried that if Jessica were actually attached to a pump I could no longer deny on any level that she was different. In between shots it is easy to deny this beast, easy to pretend life has not so dramatically changed. But a pump would be a constant, daily reminder. I had not, until that weekend, seen what the trade off was and that it would actually free Jessica from this beast in so many ways.
Armed with knowledge and full of optimism we went to our next follow up diabetes appointment and asked about pump therapy. We were coming quickly to the one year anniversary of diagnosis and I was anxious to take steps forward. We had been on a consistent carb plan (45 grams of carbs with every meal, rigid snacks of 15 grams each) and absolutely no flexibility. I was exhausted from telling Jessica that she couldn't eat when she was hungry. I was tired of telling her that diabetes wouldn't stop her and she could do anything, while at the same time constantly telling her no to all the other foods kids ate in front of her. I now had a glimpse of what life with a pump could look like and I was ready.
Unfortunately, our diabetes team was not. I could describe in great detail the barriers we faced, the tears that were shed, the sleepless nights wondering if we would ever be "allowed" a pump. I remember with great heartache Jessica asking us "Why won't they let me get a pump? Have I been bad?" We struggled and were paralyzed with what to do and where to go. Irrational thoughts would enter my consciousness such as moving to be near the best diabetes care in the country. But, where was that? It was so hard to know where to go, and whether it would be any different there.
And, then, as life has a habit of doing, it worked out. I came across the name of an old medical school classmate. I last saw him over 13 years ago at our wedding and haven't spoken since. Luckily for us, he ended up becoming a pediatric endocrinologist within two hours of us. We transferred care, and I kid you not, within two weeks Jessica had her pump.
Starting a pump is a blog entry all unto itself, but here is the lesson learned. If you know, deep in your heart, that your child's diabetes team is not a good fit, move on. This relationship, like others, is hard to break, but break it you must. The Children With Diabetes website has a column on how to know if you are receiving standard of care. Look at it. If you are not, move on. This disease is hard enough to live with without having a diabetes team that you trust, and that you can work together with.
We love Jessica's new team. Jess runs and hugs her nurse practitioner when she sees her, and my old medical school classmate is now her pediatric endocrinologist. It is reassuring to see him, and I trust him. He and the nurse practitioner are a team, and the nurse practitioner is my daughter's new cheerleader. She tells me she is counting on Jess to become the doctor who discovers a cure for diabetes. She reminds Jess every time she sees her that she is "Jessica- a beautiful, smart, wonderful girl who also happens to have diabetes...NOT Jessica, the girl with diabetes." Our new team has given me hope, and I felt a huge weight lift ever since we transferred there. I wish this for every family living with a child with diabetes. Until there is a cure, we deserve, at least that.
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