Hiding Different

She hates being different.  I would have been the same way.

Comments that may just be ones of interest, to her feel so intrusive.  I don't blame her.

I will do anything to protect her, to help her, to ease this burden she must carry.

Tonight the omnipod rep came.  This is my idea of a possible solution.  $199 for the "cut the cord" program is a small price to pay for my daughter's happiness.  It can be hidden better than her current pump with its cord and the pump bands to carry it.

She was a good sport.  She's willing to try it.  But, in her eyes I saw the truth.  There is no good solution.  She is tired of it all.  It is but yet just another gadget for her to wear and try.  Another needle insertion.  Another intrusion to her body.

Diabetes can't be hidden.  It is always there.  No matter how much she tries, she is different.

I can't fix this.  I can only walk beside her, "carrying" her when she needs it and cheering her on the rest of the time.

She doesn't believe there will be a cure.  It took only 4 years for her to lose hope.

I believe she will be ok.
I believe there will be a cure.
I believe someday she will stop hiding different and make peace with this monster she must share her body with.
I will never stop trying to ease the burden, trying to find better ways.
I love her endlessly, even more so because she is different.

Trying to Make a Difference

Ever since Jess was diagnosed I have been looking for ways to help the T1 community.  I've done the usual fundraising with JDRF, became a JDRF mentor, had the huge honor of becoming faculty for Children With Diabetes (best organization EVER!)  But, I kept looking for ways to use my medical background to make a difference.  A little tricky because I am not an endocrinologist.  I'm a family doctor.  My T1 hubby (also a family physician) and I finally have an idea.  And, we are going for it and turning it into research.  Part of that idea involves looking at many comments from Type 1 diabetes blog posts.

I was unprepared for the emotional onslaught of reading so many comments at once.  I routinely read blog posts and skim the comments.  But, I have never spent hours looking at all of them before.

It is heart wrenching.

There is no chronic, lifelong disease that comes to my mind that is as emotionally and physically challenging as Type 1 diabetes.  These comments detail that with their raw honesty.

My heart aches for my husband, my daughter, and the entire Type 1 community.

And, people don't "get it."  These comments demonstrate the isolation living with this disease can bring.

It is exhausting.  It is constantly there.  The multiple blood sugar checks, the math every time you eat, the highs, the lows, site changes, dexcom changes, injections...

So many emotions....burnout, guilt...the highs...the lows....

I am but a caregiver of a beautiful girl who is becoming a young woman, who happens to have type 1.  I hate that she has this.  I hate that anyone has it.

I see in her how isolating it is.  I hear the intrusive comments fellow classmates make.  I see how she hates being different.  She is so tired of the highs and lows.  And, it has only been a bit over 4 years.

She told me recently that she knows that I love to go on vacation, but that for her the week at Children With Diabetes is her vacation.  She told me it is the only time she can truly relax.  She doesn't have to hide in the classroom checking her blood sugar, hoping no one will see.  She doesn't hide her sites and pump, but wears them proudly like badges of honor.  She is surrounded by literally thousands of people who she knows can keep her safe.  On the one hand, I am so thankful she has this respite, and on the other hand I hope desperately that what she tells me is not true.  I can't bear the thought that she truly relaxes only one week a year.

All I can do is to keep trying.  Keep fundraising.  Keep researching.  Keep helping.  And, keep hoping.   Hoping that someday the elusive cure is found.

Purging

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.

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.