I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Tuesday, December 31, 2013


I'm ready to purge 2013.  Sure, there were great times; we have so much to be thankful for.  But, to be honest overall you could say it sucked.  Sucked is relative, of course.  We end it happy and healthy, and for that I am incredibly thankful.  We hands down have the most amazing friends and family, and that was more evident then ever this year.

Courtney's brain surgery was hands down the worst thing I have ever been through.  I barely made it through.  My family, and dear, dear friends carried me through...basically pulling me to the other side.  I know it was the lack of control.  I feel I can control diabetes, even though that obviously isn't true all the time.  And, even though I put Jess to bed every night and there is some fear of what will happen, it isn't on the same level as watching Courtney fall asleep to anesthesia and then leaving her.  Leaving her to have her brain cut open and part of it removed, to have her lose a vertebrae forever.  Because of my profession, knowing every single horrific complication that can occur, and having nightmares about it for weeks before the surgery.  My poor dog Lilly put up with many 2 am visits where I held her and simply cried and purged my terrifying fear.  I still get tears now as I write thinking about how horrible those nights were.  Yet at the same time, I have never felt so supported.  And not just by my poor dog Lilly.  My girlfriends were amazing.  I am extremely selective with close friends.  I just don't have the need or patience for anything but the real thing.  They saved me.  Brownies, daily texts, phone calls during which I must have driven them insane telling them my fears over and over again.  They were there in the waiting room when I came out after leaving Courtney behind.  One flew in and out just for the surgery.  Being there is not easy.  It is not fun to be friends with someone who is facing something so terrible.  I know...I've been friends with someone through the worst.  But, yet they were there.  Both my and Sean's family were there.  We took the worst out on them.  And, yet they were just there.  Jess was there.  She dealt so gracefully with the shift of our attention.  Seeing her those brief times while I stayed with Courtney in the hospital were a saving grace.  She was my ray of sunshine.  Before we left, our work family sent us with so many things we never would have remembered.  I worked up to and including the day we left for the surgery.  I never would have remembered to pack food, drinks, books, games for Jess and Court.  Afterwards, we were bombarded with the giving spirit of so many.  Meals arrived.  Someone payed our Believe in Tomorrow bill.  Facebook messages during and after which meant so much.  I was simply humbly amazed by humanity.  People can say there is too much evil in the world, but there is also so much good.  I will never, ever forget all that people did for us this year.

And, then I was diagnosed with celiac.  After the diabetes and brain surgery I completely blew it off as "nothing."  I didn't mourn it, didn't process it.  I mean, after the hell we had lived through this was a cakewalk.  Except, it turned out it wasn't.  As a Landshark and Taco Bell loving girl this was a lot to adjust to.  It turned out it was way harder than I thought.  Back to reading every label, but looking for more than just the carbs.  Social get togethers became stressful.  Guilt---this was yet one more thing for our friends to have to deal with.  Aren't we fun to have over?  Two Type 1's and a celiac.  Oh joy!  And, unlike the brain surgery this has no end.  I will never again taste the delicious rolls at one of my favorite restaurants, a great beer, or some of my favorite desserts.

And, so I am purging this year.

I spent the past couple of days that I had off work gutting my closet, my bathroom drawers, painting my bathroom.  Bags of trash out.  Bags of clothes for goodwill.  It wasn't until today that I realized what I was doing.  Purging the old.  I'm ready to start new.  I'm ready to get healthy again.  The stress of the brain surgery and the disruption of life while Courtney recovered derailed my 6 mile runs.  Being diagnosed with celiac and then trying every gluten free version of cookies, crackers, candy put on pounds.  I'm ready to purge them too.

So, goodbye 2013.  I am so thankful to end it with both my daughters healthy.  I am so thankful to end it with life filled with amazing friends and family.  I am so thankful to end it having seen so much good in the world.

Tonight I am lucky enough to celebrate and bring in 2014 with friends who have stuck with us since before Jess was diagnosed.  We will purge 2013 together.

Tomorrow is for new beginnings.  And, a beautifully painted bathroom.

Sunday, December 29, 2013

Don't Let Your Guard Down

Lately, we've been in a comfortable diabetes rhythm.  Jess and Sean have been doing great.  We've been at this quite awhile now with Jess.  The emotional burden has lessoned.  We are used to Jess hating diabetes at times.  We are used to the daily impact it has on our life.  It is always there, but at a level that most days is on the back burner.

And, we let our guard down.

Jess was high last night.  Not crazy high, but in the high 200's despite multiple boluses.  I was on call and so my energy was focused on the patients I was caring for.  There was nothing major going on with Jess and so I didn't focus on it.

We all slept in and got up barely in time for the girls to go to brunch with my parents.  I don't even remember what Jess was before she left.  But, it couldn't have been too high or she would have said something and I would have noticed.

After brunch she was in the high 300s.  Not terribly abnormal for Sean or Jess on occasion to run that high after an all you can eat brunch.  Not ideal, but we so rarely do all you can eat buffets that it is not alarming.  We usually correct and move on.

Jess was due for a site change and that was done.

Throughout the day she stayed in the 300's despite repeat boluses.

Then this evening.  Pow.  High 500s.

We should have pulled the site and given a shot.

But, there is a sense of pride.  And pride can sometimes breed stupidity.  You see, she hasn't had a shot since getting the pump over 3 years ago.  Giving a shot has turned into a bigger and bigger deal the longer we have gone without doing it.  Stupid, really.

We bolused one more time.  Thirty minutes later---critical high.  Above 600.  Haven't seen that since diagnosis night.  Small ketones.  Didn't have those diagnosis night.

We realize our mistake and the acuity of the situation.  We pull the site which is kinked- no surprise there.  We have turned into one of those nightmare patients that they present to you before you get your pump.  You know, the ones that demonstrate how things can go so badly so quickly on a pump.  The ones that as they present them to you, you sit there and think "That will never be us.  We would never let something that stupid happen."

I draw up the insulin into a syringe.  I haven't done this for over 3 years.  I am surprised when it feels normal, comfortable, and in some sick way I don't have time to explore, like a long lost friend.

Jess freaks when she sees the needle.  But, we get it done.  I am likewise surprised how comfortable it feels to give her a shot.  As I write, I realize that I gave so many that first year that it must be like riding a bike.

I am surprised by how I feel no guilt.  We screwed up.  And, that is all it has to be.  She's back to the 300s now, and will be back to normal before I go to bed.  I remember when much less than this would lead to me blaming myself and filled with guilt.  I don't know if it is good or bad that I feel none.  Diabetes is a monster.  You can't let your guard down.  But, we are not perfect.  Most days we nail it.  But, we can't do it every day.

And, this will even sound worse.  As the crisis passed I realize I am glad in some small way it happened.  We gave a shot.  We won't hesitate now to do that again.  We corrected a blood sugar in the 600s with ketones with no help but our own.  Jess learned how quickly problems can happen, but how quickly they can also be fixed.

And, we all were reminded that we cannot let our guard down.

Monday, December 23, 2013

I Didn't Know That

Long day of doctors' appointments today for both you and your sister.  Left at 8 am and got home at nearly 7 pm.  I'm tired.  I know you and your sister are too as you both fell asleep on the car ride home.

You were so quiet and nervous on the way down.  You were so sure that your HgbA1c was going to be "terrible."  It didn't matter what I said...you weren't listening.  You wouldn't eat breakfast.  You have this theory that if your A1c is taken when your blood sugar is in goal then it is better.  If your blood sugar is high when the A1c is checked, you swear it is higher.  You say you have been collecting data, and you are sure this is a proven fact.  I have tried to point out that the differences have been on the order of 0.2 which is not likely to be statistically significant, but even when I think I am explaining this in 11 year old terms, you nod and tell me you just know you are right.  Hence, no breakfast today.

I watch you get weighed and measured, and your blood pressure taken.  So normal to you now that you know the routine.  You prick your finger and give the blood for the A1c.  We are then taken to the room, and I see you glance back at the machine, hoping it is done and you can see the number.

You sit waiting for your diabetes provider.  So quiet.  So nervous.  You almost always bolus off the dexcom, so there are only two sugars a lot of days in your meter.  The 90 day average based on those is high, and thus you are sure the A1c will be too.  It is so new to me to see you check your 90 day average and process what it means.

Your diabetes provider walks in smiling.  She asks you if you know what a perfect A1c is for someone your age.  She says she hates to use the word perfect, but that is what it is.  You shake your head and she tells you it is 7.  And, she hands you the paper with your A1c written on it.  It is 7.  I see the relief wash over your face.  You shine a humongous smile.  This one is yours.  I have done the nights, but that is it.  She knows this, and she praises you so much I honestly get tears in my eyes.  I am so immensely proud.

I try to sit back and let the visit be between you and her.  I learned so much.

There is a boy in your classes.  He calls diabetes diaBUTese and tells everyone it is an infection of the butt.  I didn't know that.  Your amazing diabetes provider tells you he is obviously insecure about something, and goes on to make you feel better about it then I ever could.

You try to sit with your chin in your hand all the time.  This way when you treat your lows no one can see.  I didn't know that either.

You sometimes ignore your dex alarm in class and act like you don't know what it is either.  Then you pretend to reach into your bag to get something out, while you discretely look at it and turn it off.  I didn't know that.

You still feel some of the teachers don't understand your 504, and you are ignoring it at times.  Taking tests when high as you hate feeling the teachers are annoyed with you.  That, I knew.

You get low most days after gym.  I didn't know that.  And, that speaks to the control I have relinquished.  Your provider is proud of that.  She tells you that because you are doing all of this on your own and doing it so well, it will make it easier for me to tell you that you can go out with your friends alone, or spend the night.  She is right.

I watch as you and she come up with a plan for what to do about gym.  You discuss it as two adults, deciding on doing a temp basal.  I watch as she asks you if you need her to show you as a refresher how to do it.  "I got it," you reply.  "I do it all the time."

You are right, kid.  You got this.  Four years in and you have grown so much it simply blows my mind. I hate that you have had to.  I would give anything to take it from you.  But, I also know that it is you.  You are who you are, and who you will become, because of this.

At the end of the visit, your provider asks if you would consider being a mentor.  You smile..."sure."  She also takes you to see the endocrinologist (she is the CDE & nurse practitioner).  She brags to him about your A1c and your self management.  You are so proud.  I wish I could bottle up all of those feelings for you and give them to you when you come home beat up from a school full of kids and adults that just don't understand.

You are my mentor.  I hope you are your dad's.  I don't know that I would be able to do what you do.  I don't think I could do it as well.  I thought I knew how amazing you were, but...I didn't actually know that either.

Thursday, December 12, 2013

Pausing to Reflect

We just finished your site change.  There was no screaming, crying, begging, or negotiating.  And, it suddenly occurred to me that I actually couldn't remember the last time there was.  We didn't use EMLA numbing cream.  It didn't take more than 30 seconds.  As I suddenly realized this, it made me pause with wonder at how far you have come.

I vaguely remember when you were first diagnosed.  You had just turned seven.  Your fingers were so tiny.  You were so little.  My heart was broken, and it would crack further every time we checked your blood sugar.  You would scream and cry and we would have to hold you down.  And the insulin shots.  It still causes my heart to twinge to think about the first of those.  We would literally have to straddle you and we would be crying with you as we gave them.  I still hate those days.

I will never forget the pride that I felt less than a year later when you gave yourself your first insulin shot.  How, so quickly, you took over checking your own blood sugars and giving your own shots.  I remember at the time it seemed like eternity.  That first year each day dragged on so.

And, then we started the pump.  And the Dexcom.  The screaming, crying, begging, and negotiating began again.  I so hurt for you.  Everything in diabetes looks and sounds so scary, even to adults.  Needles, the big click as the site goes in, the worse click upon insertion of a dexcom.  Terrible things done to your body over and over again, and there is no end.  So many fingersticks a day.

Today you accidentally held out your pinky to me when I went to hold your hand.  We both realized, and you joked that you hope when you get married you don't hold out your pinky when they ask for your hand. You can joke about it now.

I hear you singing as I write this.  The site change a mere pause in your evening.  It used to take up your entire evening.

Lately you are the one who reminds me that it is time for a site change.  You used to stay quiet, hoping we would forget.

You focus on other things now...you are so aware of your averages.  You tell me with disgust that you don't think this A1c will be "good."  I remind you there is no "good" or "bad."  It is simply a tool to tell us which direction we need to go.  You nod, but I know you aren't really listening.  You are becoming in charge of your diabetes.  And, you are deciding how you will view things like averages and A1c's.  I only hope that we have done our job and helped you to be as well adjusted as you can be.

I wish I could go back and tell myself that terrible diagnosis day that things ARE GOING TO BE OK. I can't believe how far we have come in four "short" but forever years.  You simply amaze me.

Saturday, November 16, 2013

Middle School

Middle School.  So many new changes.  If you look at the surface, things have gone great.  Jess rocked straight A's.  She's healthy.  I think she is happy and well adjusted.

But, there are things I am so tired of.  The 504 ordeal.  I love it.  I hate it.  Getting the teachers to understand it is a fiasco in itself.  Jess is so sick of having to make up tests as she can't take them at the time as her blood sugar is not in goal.  How can a post-prandial blood sugar be in goal????  We are just not that good.  I know intellectually all the tricks.  But pre-bolusing at school for lunch isn't something done regularly.  And even with pre-bolusing and doing a low carb breakfast, she often spikes.  We've adjusted I:C ratios, we've adjusted basals. Sometimes it works.  And, often it doesn't.  And, that leads to the make up test ordeal.  Teachers staying after school is not an option we've been given.  So, Jess has flex time (study hall)  2-3 times a week in which she is to try to make up the exams (if all the stars are aligned and her blood sugar is in goal.)  That has led to exams being made up 2 weeks after the unit has been completed.  They have moved on to new material.  Is this really protecting her rights???  How many of us remember material 2 weeks after we learn it?  And, she hates it.  I honestly don't know that she doesn't hate it more than she would hate just not doing well.  There are just so many more tests and teachers in middle school.  It is so different than the amazingly supportive environment she was enveloped in during elementary school.  She might have up to 4 exams in one week or more....that is a lot to try to make up during limited time if her blood sugar is out of range.  And, I know high school is sure to be worse.  But, she is succeeding.  She has above a  97 average.  So, I guess on paper this 504 is working.  But, so many days she gets in the car and says "I hate diabetes.  I couldn't take my math test today.  Now I have to make that up too.  I have more homework as I can't get it done in flex like the other kids."  I hate that she has to deal with this.

And, the diabetes secret is new.  On this she seems so conflicted.  She doesn't want anyone to know.  She changes in the nurse's office for gym so people don't see her dexcom and pump.  But, yet, she was this years JDRF Walk Ambassador.  She texted all her friends to tell them to wear blue on World Diabetes Day, but yet she doesn't tell them the reason she is asking them to wear blue is that it is World Diabetes Day.  She tells me one day that her computer teacher was talking about how her son has Type 1.  Jess tells me she raised her hand to tell the computer teacher that he was not alone, and she had it too.  I question "I thought you didn't want anyone to know."  "I don't," she replies.  "But supporting her seemed more important than keeping it a secret."  I am so proud of her.  I know she is just exploring who she will be as a young woman with diabetes.  And, that is ok.  Up until now we have made the decision for her that it will not be a secret.  She will be an advocate.  She will be an inspiration.  She will be a source of support to others.  But, she is not a little girl anymore.  And, she must now decide who she will actually be.

There is more tension surrounding the diabetes.  Not a lot.  But the undercurrents are there.  Some days she may only check a blood sugar twice a day, rather than the 10 or more checks she has done in the past.  She has had free access to her halloween candy and has eaten many a piece although she was already high.  But, the majority of the time she makes good choices.  I will not micro-manage or try to control this part of her life as long as she is not in danger.  She has the dexcom...the data is good that it is accurate.  If she only checks to calibrate it twice a day, I am ok with that.  She boluses for the halloween candy and so I am ok with that too.  She cares about her HgbA1c.  She wears her pump and dexcom.  She boluses.  In my mind these are the big things.  During these next years, as long as she is doing these I am not going to try to control her every move.  I have seen too often what that can lead to.  I do not want her to feel so frustrated with the diabetes and how we treat her, that she rebels.  Stops wearing the pump, refuses to check at all, stops bolusing....I have seen this as a physician, I have heard many stories at CWD.  These are difficult waters to navigate.  I am not sure I am doing it right.  But, I am doing what feels right.  I know my child....she is a lot like me....and if she is forced, she will rebel.  So, I will focus on working with her.  Fighting only the big fights.  Telling her when I think she has done well.  Holding back comments when I think she has not.  Have I never eaten something unhealthy when I should not have?  Have I not had one extra margarita when I have already had too many?  I'm not perfect.  I certainly don't expect her to be.  And, luckily, we have an amazing health care provider who doesn't expect Jess to be either.  Jess respects her and listens to her.  I take comfort knowing that even if we reach a point where Jessica does not listen to me, I think she will still listen to her.

New times.  The never-ending challenges of parenting.  You master one stage, and a new one begins.  This is not unique to parenting with diabetes.  But, it does add another layer.  But, we will continue to march along.  I will continue to try to do all I can to assure that Jess becomes a healthy, happy adult.

Monday, October 7, 2013

Four Years

Four years today.  Over 15,000 finger sticks, 1600 shots, 600 site changes, 180 dexcom insertions, and too many tears to count.  And, when I reminded you a few days ago that your four year diaversary was coming up, you replied "dad has had it over 24 years...how does he do it?"

We have come a long way.   It is impossible not to feel some sadness today.  I had told myself I would not.  I mean we are in such a better place, we have so many new friends because of diabetes; you are healthy.  But, I was kidding myself.  Of course I am sad.  And angry.  I saw your beautiful little seven year old cousin this weekend.  I looked at her tiny hands.  I could not help but think of what diabetes has stolen from you.  You lost your carefree childhood at age seven.  We can tell ourselves and everyone else that we have not let diabetes take your childhood; that it does not stop you.  And, it is true to some degree.  But, not one day has passed when you have not had to say ouch, or feel a high or low, or think about diabetes. And, I hate that.  I hate that I no longer remember what it was like when you didn't have diabetes.  Vague memories are the carefree days when I didn't glance many times at my cell phone when you are away from me, when I put you to bed and didn't worry you might not be there in the morning.

The only way to survive is to focus on the positive.  You are healthy, and most days happy.  We have been enveloped by the Children With Diabetes organization and have found kindred souls who truly understand.  I can not imagine going back to the days where we felt so alone.  We have met wonderful people who we would love and be friends with even if not for diabetes.  But, it is because of diabetes we found them.  We have technology.  Your dexcom has changed my life.  Your pump has changed yours.  Hope is here.  Ed Daminao is racing the clock to make a bionic pancreas in time for his type 1 son to start college.  And many us us believe he may actually do it.  I have been given the gift of perspective.  Between your sister's unexpected brain surgery and your diabetes, I have learned what is really important in life.  I have learned to enjoy the present and to stop fearing the endless possibilities of the future.  

And so tonight we will celebrate your four year diaversary.  Another year of good health, bravery, and strength.  While I can not believe it has been four years, I will give my thanks that you are healthy and keep marching towards a cure. 

Friday, September 20, 2013

Fighting for our children

I remember sitting in on my first talk by Crystal Jackson. She suggested so strongly that children have 504 plans in place.  At the time we did not have one.  I mean, why would we?  Everything was going so well with Jessica in school.  The teachers were supportive, the principal an advocate, the nurse very well educated in Type 1.  Crystal said to me "now is the time to create one...you want to create one while everything is going so well."  I am glad I listened.

Jess has entered the unchartered territory of middle school.  What an incredibly different experience from elementary school.  Despite meeting with the middle school counselor and nurse back in April to try to make sure her transition to middle school would be smooth in regards to her diabetes, it has been anything but.  We were not given the opportunity to meet with her teachers despite asking.  We were told in middle school the nurse and counselor take care of making sure teachers understand her Individualized Health Plan and 504.  We were assured this had been done.

Jess takes her first math test.  Her blood sugar is 89 and arrow down.  She makes the decision to go off the dexcom rather than a fingerstick.  She is 11, but now in middle school so there is no involvement from the teacher.  A hard thing to manage alone at 11, when you desperately want to fit in.  You don't want to draw attention to yourself.  For the first time she now doesn't want anyone but close friends and teachers to know she has Type 1 (in direct contrast to elementary school when she spoke to the entire school on behalf of the JDRF.)  She writes 89 and arrow down on the corner of the test as she has always done, has some skittles and starts to take the exam.  She feels lower.  She stops the exam and does a blood sugar check.  She is 72 and feeling terrible (probably going down fast.)  The teacher tells her that since she was in goal when she started the test she needs to continue it.  Jess asks for 5 minutes.  She doesn't feel well.  She is "shaking like a leaf."  The teacher asks why she is not taking the test.  Jess explains she is low and can't concentrate.  The teacher than tells her she has never seen her get low in class before, and asks if Jessica will be getting low for every exam.  She asks Jessica how this is supposed to work and if Jessica is supposed to complete the test during the teacher's free time.  The whole class is listening.  Jess tells me she was near tears.  Finally, the teacher tells Jess that she can stop taking the test and that she can come back during study hall during which time she will have "one minute to complete the test."  Jess is devastated.  An email to the counselor confirms that the teacher gave a slightly different variation of the story, but with the general premises.

The teacher is not a bad teacher.  We are not angry at the teacher.  The teacher does not understand Type 1 diabetes or Jessica's 504 plan.

Many emails have ensued and today we are finally being given an opportunity to meet with Jessica's teachers as we have wanted to do since last April.  My hope is that it will be a time to educate as well as advocate, and that we can work as a team as was always the case in elementary school.

And, I am incredibly grateful and relieved I took Crystal Jackson's advice.  I was shortsighted to think things would always go well, so why would we need one?  Crystal was exactly correct that the best time to create one is when things are going well.  We now have it, and we will use it to make sure Jessica's rights are protected.

It is upsetting the time and effort this is taking.  It is hard not to be angry that my child has been hurt.  It is hard not to hate diabetes.  Yet, instead I focus on being thankful.  Thankful that we were able to attend a lecture by Crystal, and thankful that she gave me such good advice.  Thankful for the American Diabetes Association's Safe at School program and the help that is available.

I hope this story has a happy ending.  I hope the meeting today goes wonderfully and that Jess goes on to have access to safety and the ability to reach her potential.  Until then, I will continue fighting for my child and raising awareness so that all parents can fight for the safety, happiness, and ability to thrive for their Type 1 children.

Wednesday, July 24, 2013


This is my new favorite picture of Jessica.  It was taken at this year's Children With Diabetes Friends For Life conference.  To me it symbolizes the entire conference.  Before we left home for the conference, Jessica was ripping sites out of her arms as she was embarrassed, and hiding her pump.  Before, she felt insecure and alone.  She blossomed at the conference.  She was surrounded by people who "get it," and at the conference she was in the majority.  It changed her.  Just like in the picture, she is still proudly sporting the dexcom in one arm and her pump site in the other.  And, I am filled with hope that she will enter middle school feeling supported and confident.

My husband has hope.  He will have lived with Type 1 for 25 years this May.  And, he has lived well.  He has been a shining example of not letting diabetes stop you.  But he had not had hope.  I remember frantically searching research studies when Jess was first diagnosed.  I was desperate for the hope of a cure, or something that would make this terrifying disease easier.  My husband did not share my enthusiasm.  He told me at that time that he had learned long ago not to get his hopes up.  But, that has changed.  For the first time since I have known him, he is filled with hope and excitement.  And, Ed Damiano is the reason.  His work on the bionic pancreas is the most promising thing we have seen.  It gives my entire family hope that easier days are coming.

It feels good to have so much hope.  We returned from the conference rejuvenated and filled with new ideas and energy.

It is amazing to have an organization such as Children With Diabetes.  So many patients are alone and scared, without any support to be found.  It is easy to understand why they may lose hope, feel defeated, and appear to be "non-compliant."  Thank you, CWD.  Thank you for support, friendship, education, and HOPE.

Tuesday, June 18, 2013


One of many things I have always admired about my husband is that he is so comfortable with his Type 1 diabetes.  Ever since I met him he has checked his blood sugar in public, given himself insulin (the many years he was on multiple daily injections,) and had no problem with people knowing.  I don't ever remember him specifically telling people, but taking care of his diabetes was just part of who he was, and he never hid it.

From the start, we have approached Jessica's diabetes the same way.  She was seven when she was diagnosed so she really didn't have her own viewpoint on managing diabetes.  We checked her blood sugar in public, gave her injections, encouraged her to speak on the topic whether on the radio, or at school.

But, she turns eleven very soon.  She will be entering middle school.  She is now developing her own T1 identity.  And, she has every right to.

And, it turns out, that despite all of our efforts to encourage otherwise (right or wrong,) she does not feel the same way as Sean.

Nor, has she had the same life path as Sean.  He was diagnosed at almost 18, when he was much more immune to teasing and bullying, and when it was much less likely to occur.

Jess has had her fair share of nasty comments this year.  She has come home upset many days by things classmates have said.  Ten year olds aren't the nicest bunch, and I am sure middle school will be worse.

She has ripped out her dexcom site the evening of the spring concert as she didn't want everyone to see it while she was on stage.

She has hidden her pump, and refused to wear a dexcom while swimming for fear people will see.

I caught a small glimpse of a benign version of what she must deal with on a daily basis.

As a special elementary school graduation gift, I took the girls and we got pedicures together.  This should have been a time Jess could just relax and enjoy.  The woman doing her nails meant no harm at all.  But I listened as she said "If you don't mind me asking, what is that on your arm? (Jess's dexcom site.)

Jess does mind.  She hates answering these questions.  Like any almost 11 year old girl she hates being different.

As I listened to her explain that she had Type 1 and what it is, I realized that even while getting a pedicure she doesn't get a break.  She can't even get her nails done without a reminder that she is different.  And, as she told me after the pedicure, she hates this.  Of course we talked about how it is an opportunity for education and advocacy.  But, you know what?  The bottom line is that is sucks.  How many 10 year olds have to answer questions like that while simply trying to have a moment of relaxation?

Jess started a new day camp this week.  She as usual is a super hero.  There is no nurse, and she is completely self managing.  I am so proud of her.

Last night, she tentatively said "Mom, can I tell you something?"  She shared with me that she is going to the bathroom to check her blood sugars.

She realizes this is not what our family has ever done.  This is not what her dad does.  And, she is questioning whether this is ok.  Can she find her own way as a Type 1 individual in our family?

I tell her I am so proud of her for how well she is taking care of herself at camp.  I tell her that she needs to do whatever she is comfortable with.

I have not made her wear the dexcom this week.  Sean hasn't realized yet that I am giving her this break.  I am back to nightly 2 am blood sugar checks.  But, it is one way I can help her define who she is.  She doesn't want the dexcom this week.  She doesn't want one more gadget that makes her different.  And, I think that is ok.  My hope is that by a give and take she will be more accepting and adjusted in the long run.

I need to talk to Sean.  He is such an amazing dad.  But, he is so secure in his own Type 1, and he was never an almost 11 year old girl.  We need to allow her to develop her own Type 1 identity.

There is no instruction book on how to parent kids with Type 1.  We had hoped that we were raising Jess in a way that she would see diabetes as Sean does...his greatest strength.

And, maybe we are.

But, life is a journey.  Jess needs safety, acceptance, and love to explore and figure out who she will be.  Will she always test in the bathroom and try to hide any outside evidence that she is different, or will she someday be more like Sean?

We need to reassure her that either way is ok.  We love her no matter what.

As, I wrote on her note in her lunchbox today, she is my super hero.  And, if she needs to hide that fact that she is a super hero like Clark Kent did, then that is ok with me.

Thursday, May 2, 2013

A Family Disease

Jess couldn't visit Courtney in the ICU, but as soon as we got to the regular pediatric floor, a caring nurse arranged for us to take Courtney off the floor to the lobby so they could be reunited.  It was cold and flu season and nobody under 16 was allowed on the floor.  Until then they FaceTimed and those conversations were priceless.

Courtney was asked to fill out a sheet so the nurses could get to know her.  The kid had just had brain and spine surgery.  Under "What makes you scared?" she didn't list her surgery or the recovery that was still ahead.  Her response was "Jessica's blood sugars."

Anyone who thinks that only the person with type 1 is the patient is not correct.  Type 1 diabetes is definitely a family disease.

Tuesday, April 30, 2013


I am changed.  Not that this is a huge revelation.  We are all changing every day.  But, this was a big change.

I had gotten used to being the mom of a type 1 child.  I don't like it.  But, we have found a new normal.  We have found a home in Children With Diabetes.  It is still a constant, daily, exhausting struggle.  But it is a struggle that is now normal.

Finding out that Courtney needed brain and spinal surgery was hands down the most stressful thing I have ever been through.  And, that includes medical school, residency, and some pretty tough situations.

With all of those other situations, including Jess getting diagnosed I felt I was in control.  It may not have been an accurate perception all of the time, but it was at least a nice delusion.  There was no way I could delude myself that I was in control of any part of Courtney's situation.  And, things just seemed to spiral out of control.  The week of her surgery she had a big hematology work-up for a possible bleeding disorder, the kitchen sink flooded, the car was in a minor accident...  It was just one of those weeks where absolutely everything felt like it was spinning out of control.

Saying goodbye to her in the OR...watching her drift to sleep and lose all tone...that had to be one of the hardest moments of my life.  Not knowing how things would go.  Not knowing what she would be like.  Was the Courtney I know going to be the Courtney after this surgery?  I've unfortunately seen way too many complications and bad outcomes.  They prepared us that she might still be intubated when we saw her initially in the intensive care unit after surgery.  In my mind I had gone to worst case scenarios.  She bleeds to death.  She's paralyzed.  She suffers brain damage.  Sure, I could tell myself that these were very unlikely.  We had carefully researched and went to the best pediatric neurosurgeon...we had done the little that we had control over.  But, I could not stop the thoughts from coming in the middle of the night.  For the first time since Jess was diagnosed, type 1 diabetes fleetingly did not seem so bad.  Friends and family carried me through.

Seeing Courtney in the intensive care unit, I felt the biggest relief I have ever experienced.  Weeks of constant chest pressure evaporated.  She was awake.  Smiling.  Talking.  She was connected to many IVs, foley catheter, heart monitors, pulse ox, and so many things that looked foreign on her small body. But, the moment she talked to me I knew she was herself.

The hospitalization was surreal.  The night in the intensive care unit was the hardest.  I was in a fog where every two hours Courtney was examined and poked.  At one point they told me they were ruling out diabetes insipidus.  Diabetes.  The word that haunts us whenever we think of Courtney...the child not yet affected.  Diabetes insipidus is not at all the same thing as type 1, and thankfully she did not have it.

Sometime the next day we were moved to a regular pediatric floor.  I continued in a surreal state.  Nights interrupted by children screaming during procedures, a worried father walking the halls, my own daughter on a PCA (patient controlled pain medicine IV), her eyes glazed over from the narcotics and valium.  Sleepless nights with frequent vital signs and neurologic checks.  And yet, it also felt like a break.  Even as I write that I realize how pitiful that sounds.  I had one job in the hospital: to be Courtney's mom.  I did not have to check blood sugars, measure carbs, pack lunches, see patients, do all the housework.  I just had to be Courtney's mom.  And, every time I looked at her I was just so thankful beyond belief that she was alive and breathing.  It was a simple, surreal existence.  I remember thinking so many times that I could breathe again.  That constant chest pressure was gone.  I could finally see beyond the surgery.  Courtney was going to be okay.

As with Jessica and so many of my pediatric patients, I was overwhelmed with how children handle things so much better than adults.  Never did Courtney panic.  I never saw her cry in pain.  She would simply push the button for more narcotics.  She handled things better than I did, and better than I would have by far had I been the one having the surgery.  Children simply amaze me.

And, now we are home.  She is still recovering, not yet back at school.  It will be awhile before she can run and play again.  Things must heal.  But, her Chiari is cured.

I wonder how this makes Jessica feel.  I know I have thought about it.  As absolutely acutely horrific as this entire experience was, Courtney is cured.  Jess continues her battle, her cure still elusive and unsure.

Our daily life with diabetes in back.  Relentless, exhausting, but yet our normal.

And, I am thankful.  I missed normal.  I missed my delusion of control.

I look at Courtney and Jess differently.  As with all parents, I always imagine I could not love them more.  And, yet especially after this it has exponentially grown.

And, I am changed.  My perspective has changed.  I have learned twice now not to take my children's health for granted.  I hug them tighter.  I listen closer.  I am thankful for this forced time with them, without the distractions of a stressful job.

Both my children carry visible reminders that they are warriors.  Jess with her calloused fingers, and pump.  Courtney with her incision that will become a scar.

They, too, are changed.

Monday, April 8, 2013

The Gray Zone

So, here's the thing about Type 1 diabetes.  It may be a 24/7 emotionally hard, exhausting, unrelenting disease filled with painful site and dexcom changes, but to my scientific brain it is clear what to do.  We have a big study that demonstrated the lower the HgbA1c, the less likely certain complications are.  That's not to say that the body always follows those rules.  Certainly many people invest all their energies towards good blood sugar control and still end up with unfair complications.  But, I don't know that many would argue that blood sugar control is important and will likely lead to improved health.

So, when Jess was diagnosed it may have shattered my world, but at least I knew what I had to do.

This thing with Courtney is all about the gray zone.  And, I am so NOT ok with that.  I like data and proof and evidence.  And, there is none.  Two surgeons THINK she needs the surgery, but they don't have any data to back that up.  Unfortunately, the potential outcome of not having the surgery COULD be permanent numbness, weakness, or worse.  But, they don't KNOW.

Now her blood tests show her blood is just a bit too thin.  It COULD be nothing.  But, once again we just don't know.  It COULD also be a genetic condition that might increase her risk of bleeding.  And, even if it is a genetic condition and we identify it, it is unclear how to treat it.  We COULD give her a medical product that would decrease her risk of bleeding, but it also COULD cause her to form abnormal blood clots, which especially in the brain aren't a particular good thing.  And, we just don't know.

If she had prior surgery and had done well then we'd know if this abnormal lab value is anything to worry about.  But, of course my child decides her first surgery will be brain surgery rather than a tonsillectomy (violin playing.)

So, here we are in the gray zone.  At the end of the day, I just have to try to have faith that things will work out.  But, the problem is that so far my children seem to not do well with the statistic game.  And, I've seen far to many bad things happen in my career.

So, I am struggling.  I don't like living in the gray zone.

But, I don't have a choice.

Sunday, March 31, 2013

The Universe Does Not Care

Spoiler....this is not a happy, uplifting, optimistic post.  Having said that, I haven't blogged in awhile as I wouldn't have been able to write anything more than a series of curse words.

I know I am lucky in so many ways.  I have the most wonderful husband, daughters, parents, and friends I could imagine.

And, I need to remember that because I have not felt very fortunate lately.  I know there are many, many people less fortunate and I am so thankful for what I do have.

But, lately life events have been a reminder that there is no "pass on the bad luck card."  We already have two family members with chronic diseases.  Isn't a husband and daughter with Type 1 enough?  It already takes so much of our time, energy, emotional health.  So many families (and I am truly happy for them) seem to have healthy children.  So surely, because one of my daughters already has Type 1, we should be able to pass on the bad luck card, right?

The universe does not care.

Courtney is supposed to be my healthy daughter.  The one I don't have to worry about every second of my life.

Life does not work this way.  I know it from my patients.  And, I know it from other families.

But, it is still devastating.

Courtney was likely born with an abnormality in which part of her brain is too big for her skull.  It is pushing down on her spinal cord and blocking the flow of her spinal fluid.  It is creating a cavity in her spine, which if left could result in paralysis some day.  It is creating scoliosis for which she has been such a trooper wearing a brace.

She needs brain and spine surgery.  They are going to remover part of her skull (forever), part of her brain (forever) and her first vertebrae (forever.)  They assure me she doesn't need these things.  But, there are no good studies and they can't tell me for sure what would happen if we weren't to do the surgery.  But, we have seen two surgeons and they both recommend the surgery.  According to one of them "the complications are rare but devastating."  She is totally, completely healthy and with no symptoms right now except for her scoliosis.  It kills me to watch her run and play and know that very soon we will be subjecting her to a big operation where she will be in the intensive care unit and have a long hospital stay.  She will be in pain and scared.  And, she is supposed to be my healthy child.

Not to minimize these things, but why can't we have a child who needs tubes in her ears, or her tonsils out?  Why can't we have the normal scrapes and bruises of childhood?

Why, why, why do both my children now have a BIG, serious, SCARY health condition????

The universe does not care.

And, this may not be it either.  There is no pass on the bad luck card.  There may be even bigger and scarier things ahead.  And, that is a terrifying thing to realize.  Having two children with these terrifying, horrible things does not guarantee they will not get something else.

So many feelings from Jessica's diagnosis reemerge.  Will I be able to do this?  Will I be what she needs?  How will this affect her?  The anguish, the fear, the defeat.  God, can I do this again?

And, a whole different layer.  Who will care for Jess?  Where is the best place for her?  She has never been separated by her twin yet cannot visit her in the hospital due to age restrictions.  How will this effect her?  And, for the first time since her diagnosis the focus on health is not on her.  She clearly has felt the shift.  Unintentionally, she is clearly trying to adapt to this.

I wish I could just say "pass."  Sorry, we already have our hands full dealing with two of our family members having Type 1.  Nope- we can't do this too.  But, the universe does not care.

Luckily family and friends do.  As we took awhile to learn with diabetes, it takes a village.  We could not handle diabetes well without our Children With Diabetes family.  I don't think we could make it through this without our friends and family.  We are not fun to be around.  We are an unpleasant reminder that bad things can happen to everyone's children.  And, there is no limit to these bad things.  Yet, a handful of friends has come forth and stood by us.  While we have been disappointed in some, we have been amazed by others.  Our parents have been a steady source of support.

And, so I am reminded of the powerful words "I can do this."  Once again, I can do this because I have to.  I don't have a choice.  My family doesn't have a choice.

So, we will do this.

Tuesday, February 12, 2013

Spare a rose, Save a child

When Jessica was diagnosed with Type 1 diabetes at age 7 my world shattered.  But, because we live in the USA she is now thriving and healthy.  Other parents are not so lucky.  In other parts of the world, little girls just like Jessica do not go on to become healthy, happy 10 year olds.  They die.  And, this is not ok.  Luckily, there are organizations that are trying to help.  This Valentine's Day support Life For A Child.  Spare a rose and save a child.

Just $1 a day provides a child with:
  • regular insulin
  • quality blood glucose monitoring equipment (meter, strips, lancets)
  • essential clinical care
  • up-to-date diabetes education materials
  • specialised diabetes training for medical staff 
The scope of what needs to be done is vast.  Diabetes management is complex. While the first step is getting access to insulin, it needs to be followed up with education on managing diabetes, extending sustained care and also improving the quality of care. This takes both time and ongoing resources, so donations such as yours are crucial to the success and longevity of the Life for a Child Programme. Thank you for your contribution.
Dr Graham Ogle, LFAC General Manager.
Join myself and other bloggers from the Type 1 diabetes world in getting the word out.  This Valentine's Day be a hero.  Spare just one rose, and instead donate a dollar to save a child.

Thank you.



Thursday, February 7, 2013

It Takes A Village

I don't know how patients do it alone.  I truly think I had Caregiver Burnout last month.  And, I think Jessica had Diabetes Burnout.  We were both just so sick of every check, and dealing with every high and low.  Math tests that had to be taken during recess due to high blood sugars.  Site changes, Dexcom changes, Dexcom alarms, the food scale, guessing at carbs, packing all the ridiculous diabetes baggage for a trip, security fiascos, and the list goes on and on.  I was feeling unusually down, and I think Jess was too.

And then something wonderful happened.  It was time for the Children With Diabetes Focus on Technology conference.  Home.  Friends.  No explanations necessary.  No food scale necessary.  Inspirational people.  And, phenomenally inspirational talks by Sebastien Sasseville and Ed Damiano.

I came back from the weekend refreshed, full of new energy and ideas.  And, Jessica came back happier and less angry.  It truly takes a village.

And, this week when the sneaky "I hate diabetes" moments have snuck into our lives, I have instead thanked diabetes.  I can't believe the wonderful people I have met because of diabetes.  Our circle has expanded in huge ways that never would have occurred had Jess not been diagnosed.  I have watched my T1 hubby become hopeful again, happier, less alone.  I don't think we ever would have attended a CHILDREN with diabetes conference had Jess not been diagnosed.  But, it turns out that Children With Diabetes is the perfect circle of support for ADULTS with diabetes.  We have met so many absolute heros who have been living with Type 1 for 20, 30 years and more.  They are inspirational.  They provide support to our whole family.  They give me perspective.  They lighten my load.  They share a kinship with my T1 hubby.

So many "wow" moments, so many inspirational moments.  Below are just a few of the tweets from the conference:

"Avoid miscarried helping."

"No one is truly independent.  The hallmark of being an adult is knowing when you need help and asking for it."

"Great response to teenagers: how'd that work for you?"

"Teasing or bullying hurts our (parents') hearts more when it is about diabetes."

"Ask your child how they would like you to ask them what their blood sugar is."

"Give your child the gift of struggle."

"Fair is something you buy tickets to.  The rest is called life."

"Preschoolers may think they did something to cause diabetes."

"My daughter is not a mouse.  If she was she would have been cured 300 times by now."

"Pre-bolus and check one more time a day."

"The person with diabetes who knows the most lives the longest."

"We need to change to a prevention minded society."

"You can set the bar, but it's important to know that bar moves."

"It's ok if diabetes slows you down, but don't let it stop you."

And, perhaps the best quote to end with (from Sebastian Sasseville): "Do not regret having diabetes.  Greatness always come in the face of obstacles."

This is a ridiculously hard walk, but you don't have to walk it alone.  It takes a village to raise a Type 1 child.  And, it takes a village to be an adult with Type 1.  Thankfully, that village exists...in the form of a wonderful organization called Children With Diabetes.