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.
Tuesday, May 10, 2011
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.
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