We attended our first Children With Diabetes conference this weekend. To say that it was an absolutely amazing would be the understatement of the year. It was like going home. It felt as though we were welcomed into this huge amazing family with open arms.
Jessica has struggled deeply lately. Although in retrospect it makes perfect sense, I did not realize that it is partially because she has entered a new developmental stage. When an adult is diagnosed with a chronic disease they are, for the most part, done developing. Children continue to work through the developmental stages. So, what diabetes meant to Jessica at age 7 is very different than what it now means to a 9 1/2 year old. She has been processing and mourning what the diagnosis means to her at this age, and it has been a bumpy road. Add her major growth spurts and pre-pubertal hormones into the mix and the high blood sugars have made her even more miserable. My heart has ached for her, and I have been more than a little frustrated at taking the burden of many of her outbursts. She has told Sean and I often that we don't know what it feels like to be her. She is absolutely right. And, so we registered for this conference hoping it would help. Jessica was not excited to go Friday..."why do we have to go to this conference? I know I'm not alone in having diabetes...why do I have to go see other kids with it too?" But, we drove to Conshohocken (I kid you not...that is really the name of the town!) and made it to the hotel late Friday night.
Within an hour of the conference starting I knew we had done the right thing by coming. There is simply nothing else like spending time with other families who in this one area are living as we are. We saw old friends and met so many new. We all share the same language, we all know the emotions, the roller coasters, the highs, the lows, the fear, the pain, the hope...it was like being surrounded by so many kindred spirits.
The day was packed with lectures for the grownups, while the kids were in their own sessions. My mind spun from the graphs, the equations, the massive amounts of information being thrown in my direction. My heart ached from hearing others diagnosis stories, and bled from talking with the newly diagnosed. I am not yet so far out from Jessica's diagnosis that it does not cause physical pain to think about it, and to see others in such pain. But yet, I was able to tell them..."It gets so much better." And, it has. It so completely has.
I met so many absolutely amazing kids. Kids that were diagnosed at 8 months, 12 months, 2 years. Kids that were diagnosed the same age as Jess. Kids that were diagnosed older. All of these amazing heros who prick their little fingers multiple times a day, endure injections and site changes on their small bodies, brave highs and lows even when some of them are too young to even understand why they feel this way. They are not without fear or anger. But they are resilient and brave, and above all else they are kids.
I met adults living with Type 1 who were inspiring. They give me hope. They comfort Sean who has lived his life with Type 1 in relative isolation. Getting diagnosed at almost 18 has its own pitfalls...he didn't have the chance as a child to be connected into the Type 1 community. There were so many awe inspiring adults with Type 1....it was humbling to be around them and to learn from them. I found myself swallowing tears multiple times as I watched with huge gratitude as they enveloped the Type 1 kids in hope and support. I watched as Sean experienced such comfort talking with them. He thanked me for registering that first night with tears in his eyes...he told me that he knew we did it for Jess, but that he needed it too.
I watched Jessica smile and run with her new buddies. I held back tears of comfort watching her and her friends check their blood sugars together. I laughed as she showed me a friends pump covered in duct tape (the new tween rage-duct tape?!) and tell me she wants to do that too---"Mom, isn't a duct tape pump cool?" I listened in complete shock as she told me "Mom, I might not take the cure if it comes...I actually am ok with diabetes," as she then fled off again with her Type 1 buddies. I watched proudly as she showed other kids her Dexcom...the very gadget that she only months ago refused to wear.
A group of us went to dinner last night...what an amazing experience to be able to say to other parents..."How many carbs do you think are in that?" How comforting to groan with another mom that the night might be rough with the likely highs from eating out. For the first time ever we forgot to bring insulin...how amazing to have another adult Type 1 bring us a bottle, and also a new pump site for Sean to try that she thinks he'll like better.
This morning new friends came down without the mom. "She's still sleeping?" I ask. "Rough blood sugar night" says the dad. Their adorable T1 daughter sits laughing and happy. How comforting to look at them and know exactly what it is like. The exhaustion, the worry, but the pure joy in seeing your happy child un-phased by the rough blood sugar night as they slept soundly while the parents kept watch.
The morning wrap up lecture was incredible. But, it was completely emotionally draining. There were many tears shed as one dad shared his experiences in raising two T1 kids. The fine balance between supporting your child, but yet allowing them to stand on their own. The inspiring slides of all the famous and not so famous type 1 kids that have grown up to do amazing, amazing things. The powerful words he spoke to all the T1 kids as he told them they can do "ANYTHING!"
There were tears shed by Jess when we told her it was time to go. She handed me a stack of papers with all her new friends phone numbers. I watched as they giggled and talked of meeting in Orlando this summer for the Children With Diabetes Friends For Life conference.
So many other huge things happened...we met Kerri Sparling of Six Until Me. My kids adored her, treated her like a celebrity, and asked for her autograph. For me, it was surreal...I have read her blog so much these last two years. Her musings have comforted me, brought me hope, and been refreshing in their honesty. To meet her in person, was truly incredible.
Watching Jessica be in the majority instead of the only kid with diabetes was phenomenal. Here, at this conference, Courtney and I were the minority with our still working pancreases. Yet we were welcomed as part of the Type 1 diabetes family. I watched thankfully as a T1 adult told Courtney that it was ok her pancreas still works, and explained to her that she was something called a T3 and that Type 3's are incredibly important people. I watched as Courtney became fast friends not only with all the type 1 kids but the siblings without diabetes as well.
As we have found with the other family support weekends we have attended...return to the real world is hard. At the conference the food is labeled, and the world is sheltering. We left so incredibly happy that we attended, but also emotionally drained. There is so much intellectual information to absorb, and so many emotions exposed that I find I come home exhausted. I find myself wishing that every one of my patients could find a support group such as Children With Diabetes. We all returned more motivated, and more healed. And, we are already counting down the days to our next Children With Diabetes conference.
Sunday, February 26, 2012
Thursday, January 5, 2012
The Good, The Bad, and The Ugly
Insight. I'm thankful for it, but it doesn't alone make what happened last night easy to bear. I didn't sleep well and woke thankful that I have a place to air the dirty laundry and hopefully in the process help others to not feel alone.
Jessica was exhausted. Second day back at school after a long, luxuriously unscheduled break. She had a babysitter all night due to really late work meetings for mom and dad. A social studies test tomorrow that she is stressed about. And, then for whatever reason her pump site that had apparently been bothering her all day started to really hurt. The debate...do we change it at 9:30 pm or not? And, as a side note...why in every rare while do these sites start to hurt after only being in a day or two? Scar tissue hitting a nerve??? Anyone know??? At any rate we make the possibly unwise decision to change it. Due to her once again somewhat high numbers I am unsure if it is working well, and figure the last thing we need on a busy school morning is an unexpected site change. Besides, I reason, we've gotten pretty good at quick site changes. We should be able to get a new one in lickity split and get her (and her sister) back to bed which is where they desperately need to be as it is now 9:45 at night. My T1 hubby says he'll do it (thank God) and I jump on the computer for my ever so disliked task of planning tomorrows meals and carbs.
And then I hear it....a blood curdling scream followed by hysterical crying. Apparently, we have hit a nerve. Now, I am sure it hurt. But, in my experience as a mom I have definitely learned that in a over-tired child crying breads more crying. And, in this case a complete breakdown. I know from common sense, and from the absolutely wonderful SETEBAID (we turn diabetes around!) family support weekends, that I need to let her have her emotions and just support her. But, this one was a doozy. She laid pounding her fists screaming "I want the artificial pancreas now." "No, I don't...I don't want anything, I just want a cure" followed by more sobbing and "I know a cure won't come in my lifetime....it is just too hard to do....I mean how will they get my broken pancreas out?" And then she turns to my husband "this is so much harder for me....I got it at seven....you didn't get it until you were seventeen....why did I get it so young???" This followed by even more self pity that as a parent was devastating to watch..."Why me???? Why did it have to be me????" At this point her twin sister who is there also holding her and telling her she loves her bursts out crying. Now, anyone at all insightful would realize that Courtney, being Jessica's twin sister, probably asks herself this on a routine basis. Courtney is now crying. "Jessie....I wish it was me. I wish I could give you my pancreas. I want it to be me." She then declares "Jessie-I know what I will do when I grow up...I am going to find a cure." At this point Sean and I are near tears ourselves. Well, that's a lie. I am in tears. A psychiatrist would just have so much fun analyzing this on so many levels.
We let them cry, telling them we love them. We stress to Jessica that she is not alone. She has so many who love her. I remind her of all those that support Team Jessica through walking with us and contributing. I know from medical school training that you never, ever take away a patient's hope. Sometimes that is all they have. I tell her that scientists are working hard everyday to make better technology and to find a cure. I tell her I know it will happen in her lifetime. I remind her that we don't know why things happen. I remind her of our adorable, beautiful friend who lost his little short life to cancer. It wasn't his fault, just as this isn't hers, just as all the incredibly crappy things that happen to so many are not their faults. I tell her I am sure she will do great, amazing things in life because diabetes has made her stronger. But, I tell her she has every right to feel this way...it is normal...anyone would. But, we will not let diabetes win. She hugs me tight for what seems like forever. As tears stream down my face I pray I am doing this right...being what she needs...saying the right thing. But, I also know there is no "right," and remind myself that 99% of the time she is a well functioning, happy, amazing child. And, I am so thankful she feels safe and can have these kind of breakdowns as I also know they are necessary.
I take Courtney aside. My heart aches for her as much as for Jessica. I tell her what an absolutely amazing sister and daughter she is. I tell her that it is ok she was not the one that got it. It is not her fault. It is nothing she did. None of us know why it was Jessica, but I would never, ever want Courtney to have it. I tell Courtney that she must follow her dreams. I tell her that the way to support Jessica is not to dedicate her life's work to finding a cure if it is not her passion, but to always support Jessica, which is exactly what she is doing. She, too, gives me a huge hug. And, I again try to remind myself that I have to believe she will be ok. And, I remind myself just as these events are Jessica's life story, they are also Courtney's. These events will shape both of them, help them to be resilient, and make them who they will become.
We finally get them to bed at 11 pm. I give my wonderful husband a huge hug. I tell him that as absolutely heart wrenching this evening was for me, I know it was worse for him. I remind him it is not his fault. Just shitty genes, and whatever environmental factor triggered them. I remind him what a wonderful role model he is for her. He doesn't say much...he is always the picture of quite strength. I can only imagine what is going through his mind. I tell him I love him and we will get through this together, just like we do everything.
I remind myself that things could be so much worse. Insulin exists. We can afford it. She doesn't have cancer. We have such great support from family and friends. I allow myself a few minutes of self pity in the shower. I feel alone. I am so tired of it. I'm tired of not being able to get her numbers under control as she seems to be hitting growth spurt after growth spurt. I'm tired of feeling it is my fault I can't. I know I am smart...shouldn't I be able to control these ridiculous numbers. I am tired of picturing her sticky red blood cells and worrying that they are already causing damage. I'm tired of worrying about the emotional impact this hated disease is having on my whole family. I'm tired of it taking so much of our strength, time, money.
But, I dry my tears, We will march on. We will not let diabetes win. I remind myself of all we are doing. I remind myself that life is full of ups and downs, but that it remains beautiful. I remind myself we are not alone. We have so many who love and support us, and for that I will always be incredibly thankful. I feel so thankful we have a Children with Diabetes weekend coming up in February. I will register for the next one in June. I feel thankful I realized this week that Jessica can take Courtney with her to Clara Barton camp. She has refused to go to camp as she doesn't want to go without her sister. Thank God Clara Barton has been wise enough to realize that siblings are a part of the team. I decide I will email her wonderful healthcare provider and ask for help instead of waiting until the next appointment. I remind myself that diabetes has made my family so much closer and made me a better doctor.
I remind myself that to fully enjoy and appreciate the good in life, we must deal with the bad and ugly too.
Jessica was exhausted. Second day back at school after a long, luxuriously unscheduled break. She had a babysitter all night due to really late work meetings for mom and dad. A social studies test tomorrow that she is stressed about. And, then for whatever reason her pump site that had apparently been bothering her all day started to really hurt. The debate...do we change it at 9:30 pm or not? And, as a side note...why in every rare while do these sites start to hurt after only being in a day or two? Scar tissue hitting a nerve??? Anyone know??? At any rate we make the possibly unwise decision to change it. Due to her once again somewhat high numbers I am unsure if it is working well, and figure the last thing we need on a busy school morning is an unexpected site change. Besides, I reason, we've gotten pretty good at quick site changes. We should be able to get a new one in lickity split and get her (and her sister) back to bed which is where they desperately need to be as it is now 9:45 at night. My T1 hubby says he'll do it (thank God) and I jump on the computer for my ever so disliked task of planning tomorrows meals and carbs.
And then I hear it....a blood curdling scream followed by hysterical crying. Apparently, we have hit a nerve. Now, I am sure it hurt. But, in my experience as a mom I have definitely learned that in a over-tired child crying breads more crying. And, in this case a complete breakdown. I know from common sense, and from the absolutely wonderful SETEBAID (we turn diabetes around!) family support weekends, that I need to let her have her emotions and just support her. But, this one was a doozy. She laid pounding her fists screaming "I want the artificial pancreas now." "No, I don't...I don't want anything, I just want a cure" followed by more sobbing and "I know a cure won't come in my lifetime....it is just too hard to do....I mean how will they get my broken pancreas out?" And then she turns to my husband "this is so much harder for me....I got it at seven....you didn't get it until you were seventeen....why did I get it so young???" This followed by even more self pity that as a parent was devastating to watch..."Why me???? Why did it have to be me????" At this point her twin sister who is there also holding her and telling her she loves her bursts out crying. Now, anyone at all insightful would realize that Courtney, being Jessica's twin sister, probably asks herself this on a routine basis. Courtney is now crying. "Jessie....I wish it was me. I wish I could give you my pancreas. I want it to be me." She then declares "Jessie-I know what I will do when I grow up...I am going to find a cure." At this point Sean and I are near tears ourselves. Well, that's a lie. I am in tears. A psychiatrist would just have so much fun analyzing this on so many levels.
We let them cry, telling them we love them. We stress to Jessica that she is not alone. She has so many who love her. I remind her of all those that support Team Jessica through walking with us and contributing. I know from medical school training that you never, ever take away a patient's hope. Sometimes that is all they have. I tell her that scientists are working hard everyday to make better technology and to find a cure. I tell her I know it will happen in her lifetime. I remind her that we don't know why things happen. I remind her of our adorable, beautiful friend who lost his little short life to cancer. It wasn't his fault, just as this isn't hers, just as all the incredibly crappy things that happen to so many are not their faults. I tell her I am sure she will do great, amazing things in life because diabetes has made her stronger. But, I tell her she has every right to feel this way...it is normal...anyone would. But, we will not let diabetes win. She hugs me tight for what seems like forever. As tears stream down my face I pray I am doing this right...being what she needs...saying the right thing. But, I also know there is no "right," and remind myself that 99% of the time she is a well functioning, happy, amazing child. And, I am so thankful she feels safe and can have these kind of breakdowns as I also know they are necessary.
I take Courtney aside. My heart aches for her as much as for Jessica. I tell her what an absolutely amazing sister and daughter she is. I tell her that it is ok she was not the one that got it. It is not her fault. It is nothing she did. None of us know why it was Jessica, but I would never, ever want Courtney to have it. I tell Courtney that she must follow her dreams. I tell her that the way to support Jessica is not to dedicate her life's work to finding a cure if it is not her passion, but to always support Jessica, which is exactly what she is doing. She, too, gives me a huge hug. And, I again try to remind myself that I have to believe she will be ok. And, I remind myself just as these events are Jessica's life story, they are also Courtney's. These events will shape both of them, help them to be resilient, and make them who they will become.
We finally get them to bed at 11 pm. I give my wonderful husband a huge hug. I tell him that as absolutely heart wrenching this evening was for me, I know it was worse for him. I remind him it is not his fault. Just shitty genes, and whatever environmental factor triggered them. I remind him what a wonderful role model he is for her. He doesn't say much...he is always the picture of quite strength. I can only imagine what is going through his mind. I tell him I love him and we will get through this together, just like we do everything.
I remind myself that things could be so much worse. Insulin exists. We can afford it. She doesn't have cancer. We have such great support from family and friends. I allow myself a few minutes of self pity in the shower. I feel alone. I am so tired of it. I'm tired of not being able to get her numbers under control as she seems to be hitting growth spurt after growth spurt. I'm tired of feeling it is my fault I can't. I know I am smart...shouldn't I be able to control these ridiculous numbers. I am tired of picturing her sticky red blood cells and worrying that they are already causing damage. I'm tired of worrying about the emotional impact this hated disease is having on my whole family. I'm tired of it taking so much of our strength, time, money.
But, I dry my tears, We will march on. We will not let diabetes win. I remind myself of all we are doing. I remind myself that life is full of ups and downs, but that it remains beautiful. I remind myself we are not alone. We have so many who love and support us, and for that I will always be incredibly thankful. I feel so thankful we have a Children with Diabetes weekend coming up in February. I will register for the next one in June. I feel thankful I realized this week that Jessica can take Courtney with her to Clara Barton camp. She has refused to go to camp as she doesn't want to go without her sister. Thank God Clara Barton has been wise enough to realize that siblings are a part of the team. I decide I will email her wonderful healthcare provider and ask for help instead of waiting until the next appointment. I remind myself that diabetes has made my family so much closer and made me a better doctor.
I remind myself that to fully enjoy and appreciate the good in life, we must deal with the bad and ugly too.
Saturday, December 24, 2011
All I Want For Christmas Is A CURE!!!!
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!
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!
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.
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