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.

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.

Someday...

Someday, I hope I can look back and feel I did my best and that it was good enough. So much of my emotional well being is tied up in Jessica's blood sugars. I stay sane by getting so much support from the other parents of CWDs I know- both in person and online. I know I am not alone, even though it often feels like I am. I know all of us temporary pancreases judge ourselves at times by the numbers. Jess's last visit I was on cloud nine- best HgbA1c we've had in months. And then bang. Just like that the numbers went crazy the very next day. There was no rhyme or reason. Someday, I hope I learn that its not my fault or my failure that causes this craziness in her numbers. Everything is still so fresh and new that I still have this crazy idea I can control this disease. I am slowly learning sometimes the numbers have a mind of their own.

Someday, I hope I can look back at Jessica's early childhood and not wonder if I did something wrong. Should I not have let her drink so much of the chocolate milk she loved? Should I have found options so that she wasn't in daycare? Should I have breastfed longer? Would any of it made any difference?

Someday, I hope I can stop the occasional thought of Courtney getting T1 from entering my mind. It enters less now than when Jess was first diagnosed. But, yet every so often when I am least expecting it, the thought arrives.

Someday, I hope I can learn to live in the moment and not fear the future so much. I hope I can learn to trust that Jessica will turn out to be the emotionally and physically healthy adult that I am trying so hard to raise.

Someday, I hope I can stop waiting for those in my life that just don't get it to suddenly understand.

Someday, I hope I hear that a cure has been found.

Someday, I hope I can look back at pictures before Jessica was diagnosed and not wonder..."did she have it then?"

Someday, I hope I can be as happy as I was before she was diagnosed.

Someday, I hope I can have a break...just a short break...from the 24/7 I have been living since Jess was diagnosed. Yet, somehow I know when that break comes it may not truly be a break. How can I forget Jess must always live with this? How can I truly trust that another temporary pancreas will be as diligent as I am.

Someday, I hope I can not feel a knife through my heart when Jessica says "I hate diabetes." I realize this is just her way of coping, and I'm glad she can express it. I hate diabetes too, but to hear her say it causes me such pain. Someday, I hope I learn to just let it bounce off me.

Someday, I hope I have the time to get as involved in the JDRF advocacy avenues as I want to.



Today, I am so thankful to have two beautiful daughters, who for some reason see through all of my faults, and still look at me with stars in their eyes.

Today, I am so thankful to have the most wonderful husband in the world. He provides endless support and comfort to me. This month marks the 22nd year he has been living with Type 1. He has weathered it so admirably, and serves as such an amazing role model for my daughter.

Today, I am so thankful to have the most amazing friends I could ever imagine.

Today, I am so thankful to have a mother who has learned all she can about counting carbs. A mother that although she herself is deadly scared of needles, has learned to check my daughter's blood sugar. A mother that has been an endless source of support to me since my daughter's diagnosis. A mother that says "I know honey...I know," and really does.

Today, I am thankful to have a dad I can always count on. A dad that has come with no notice to watch my sick children, even if it meant canceling his own important work functions. A dad that has never once made me feel guilty about his helping, but instead has told me "I consider it an opportunity." A dad that has approached things in such a unique way with my CWD...teaching her to look at the scientific side of getting a pump and making it seem so fascinating to her little mind. A dad that makes sure that if my husband can't come with me to my daughter's diabetes appointments, he is there so I am not alone.

Today, I am thankful for Courtney, my T1 daughter's twin sister. I am thankful that she allows Jess to just be Jess. She doesn't see her as a diabetic or different, but as a best friend and playmate. She takes care of her when she needs it. She looks out for her when I can't be there. But, most importantly she allows her to just escape. Escape to the land of make believe where diabetes can not enter. I am thankful for the grace with which she has handled the relative lack of attention she has received since Jessica's diagnosis. She is an amazing human being and I am so incredibly proud of her.

Today, I am thankful for Jessica's diabetes care provider. She is such a source of knowledge, support, and advocacy. She has truly made such a difference in all of our lives.

Today, I am thankful for how far I have come. It has been one year and seven months since that dark day. I have survived. I have grown. I have learned so much. I have found joy. I have comforted others. I have become a better doctor in many ways. I have become a better wife.


Tomorrow is full of possibilities.

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.

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.

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."

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.