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.

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.

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.

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.

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. 

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.

Hope

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.