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.

Friday, March 13, 2015

Two Plus Two Does Not Equal Four in Diabetes

I'm ready to throw my hands up in the air and scream this week.  Oh, diabetes, I am used to your tricks by now.  But, that doesn't mean I like them.  Where else can I put in so much work and at the end of the week feel like I have accomplished nothing?

I was warned about the puberty hormones and blood sugars.  I knew it would be more challenging.  But, I thought there would be some pattern.  I love problems and finding solutions.  I thrive at being analytical.  I mean I kicked butt on the analytical portion of the GRE's during the brief time I thought about going to grad school.  But, there is no pattern here.  There is no mathematical answer to your behavior this week.

One night you are high.  I adjust the rates by the smallest amount possible and keep all other variables the same.  The next night you are low.

Yesterday morning you had lows in the 60's at school.  I adjusted the rates by the smallest amount possible and gave you a low carb (10 grams) breakfast...this morning you are hanging out all morning close to 350.  Mathematically there is absolutely no way this makes sense.  And, there is no in between basal to adjust to.

We saw your diabetes provider for your routine visit Monday.  She adjusted everything.  The next 48 hours your sugars were worse then before we even went to the visit.

I know we will get back on track.  Just like I know some weeks diabetes just does what it wants.  It could be hormones, stress, the wind...who knows what is affecting your numbers this week.  But, I know it will pass.  We can manage this and we will.

What I struggle with is how you feel.  You feel horrible when you are high.  You don't have a good day.  You can't focus in school.  You hate feeling sluggish and cranky.  And, feeling low isn't any better.  And, you are frustrated.  You don't think we will get things back on track.  You tell me you just want a break from the highs and lows and work...just for one day.

"I've got this," I tell you. "We can do this."  I reassure you that we will get your sugars back in goal again soon.  I tell you again that we are a team.  We will always be a team.  But, God do I wish I could just take this for you.  I would gladly take the highs, the lows, all the work to just give you a break.  And, I can't.  I can give up sleep and at least give you that break.  But, I can't take it from you during the day.

We've been here before.  And because we've been here before I also know we'll be back to smoother sailing soon.  Maybe this weekend we'll play smash the Omnipod.  I think I'll write the word "diabetes" on every used pod.  Let's see who wins this weekend, Diabetes.

Friday, January 30, 2015

What I Wish I Knew

Two weeks before D
Living well with D
We watched home videos last weekend.  Ironically, the random one we picked was of the time right up until your diagnosis.  You looked so healthy and happy.  Your last soccer season before you were diagnosed.  Your last school concert.  Your last vacation.  It was the last year of your carefree childhood.  The last year I had the luxury of worrying about "normal childhood" things.  We had no idea the absolute devastation that lay just weeks ahead.  I looked over at you as we watched.  I wondered if you realized we were watching "before diabetes."  Do you remember those first seven years?

I wish I had known that terrible night that things would be ok.  I still remember the despair I felt.  The beginning was nothing less than terrible.  Holding you down to give shots.  Forcing you to stay on a ridiculously strict meal plan.  Mourning our loss of normal.  I hated those days.

I look at you now.  Tonight I came home late.  Exhausted from a long week with too much work and too little time.  Sleepless nights with dexcom alarms thrown in the mix.  You had made dinner---all by yourself-just to help out.  Last night you overheard me telling your dad that I was less than thrilled about going by myself to your sister's choir concert.  "I'll go with you, Mom" you said.  "I don't want you to have to go alone."  I see your compassion when talking with me about kids at school that are different or teased.  I can't help but think that diabetes helped make you such an empathetic, caring, and compassionate young lady.

You brought home straight A's this week.  You didn't delay one single test due to high blood sugars.  We've told you that you can.  You have a 504.  But, yet you didn't.  And, you still managed straight A's.  I watched you play guitar tonight.  It occurred to me that it is your third musical instrument.  And, the callouses you have from checking blood sugars are an asset to a guitar player.  I discovered a goal setting activity you did in guidance class.  When instructed to think about something you want to achieve, you state "I want to become a doctor because I get to help people."  When asked to describe whether this goal is realistic you write "Yes, because I have already learned more than most first year medical students."  Your dad and I may talk about medicine a bit too much at home, but what I didn't notice until my mom pointed it out is that there is absolutely no mention of diabetes on this two page paper.  Even when asked if there are any roadblocks or barriers that might get in the way of you achieving this goal you state that only a few people get into medical school and this might be a barrier or roadblock....but, you never say anything about diabetes.  Diabetes simply does not stop you.  I don't know if you would have been as interested in medicine if you didn't have diabetes.  I think you would have.  And, of course I don't know if medicine will truly be your calling.  You remind me so much of myself at your age.  I knew for certain that I wanted to be a doctor.  And, I would like to think that you are exactly where you would have been even without diabetes.  I truly think you are.

I remember how you used to cry and have panic attacks with every single site change.  At our first Children With Diabetes conference we asked everyone we could what we could possibly do to help.  We tried numbing cream, the buzzy bee...what seemed like a million different tactics.  And yet every third night or more our lives were paused for 30-60 minutes while we tried to console you, or while your dad and I fought with each other about the right way to do this (me..."just do it quickly so it is over with...and your dad "don't do it until she is ready"....I later realized this was because he carried his own guilt over your diagnosis.)  It was truly exhausting and terrible.  And, the other night I realized that other than the "ugh...it's site change night," there is absolutely no drama.  Sometimes we use numbing cream, and other times you tell us to forget it and just get it done.  But, there are no tears.  No panic attacks.  You can do it on your own, but still want us to do it for you.  And, that's ok.  I wish I could do it instead of you for the rest of your life.  But, you have become so strong and brave.

I remember our first vacation to an island only accessible by boat shortly after you were diagnosed.  No grocery stores, pharmacy, or doctors on the island.  I remember wanting to cancel that trip.  I was terrified.  What if you went into DKA?  What if you had a hypoglycemic seizure?  It was an amazing trip.  And, we handled everything just fine.  You didn't go into DKA, nor did you or have you ever had a seizure.  And, I look at where you have been since then.  You've hiked the Narrows at Zion...miles away from any civilization and without cell phone reception.  You've gone on boat trips to the middle of the Caribbean Sea where you've snorkeled caves and gone to deserted islands.  You've gone to the top of Pike's Peak and deep into the Grand Canyon.  All with diabetes tagging along.  But, you haven't let it stop you.  I have talked aloud as I plan for each adventure---hoping to teach you that the key is just preparing.  I watch now as I see you do the same thing.  We went back to the same island recently.  You did have ketones and we did just fine.  We are confident in our diabetes management now.  Confident that we can handle most things.  We didn't feel that way in the beginning. But, we do now.

Many roads still lay ahead.  We have the adolescent years to navigate, and I can't even yet imagine how I will cope with the transition to college.  I remember telling a dear friend that the only reason I couldn't wait for those years is that I would finally get some sleep.  I was more than a little devastated when she replied "No you won't.  You'll still wake up.  And, it is even worse because you can't go down the hall and check her and make sure she is fine."  But, I believe the bionic pancreas will be here by then.  I believe it will be ok.

I wish I had known....

diabetes would make you so compassionate and brave

diabetes would bring our family closer

diabetes would not stop you from thriving and reaching your goals

diabetes gets easier...not easy....but easier

diabetes wouldn't stop us from what we like to do best together...traveling

diabetes would lead to new passions in your dad and I's careers

diabetes would lead us to new friends...it would expand our world

diabetes would lead us to a magical conference in Orlando every July

diabetes would be why I was finally diagnosed with celiac and then I became healthier and stronger

diabetes would simply not stop you...you wouldn't let it win.

I wish I had known that although five plus years later there are still ridiculously hard days, it is ok.  You are ok.  You are more than ok.  You are thriving and I have simply never been so proud of you.

Thursday, October 9, 2014

5 Years

5 Years
Five Years.  Five ridiculously long years that at the same time have gone by in the blink of an eye.  I remember that night...five years ago.  The night our world shattered.  I remember holding you in the emergency room while your sweet little body was violated in ways that would become your normal.  I remember the absolute terror I felt thinking about your future.  I remember the black that followed.  The guilt I felt over that black.  We had just had dear friends loose their precious little boy forever to cancer, you see.  So, what possible right did I have to experience such absolute devastation over this?  I remember holding you down while you screamed for those first shots.  You have to know without doubt that your dad and I tried absolutely everything we could think of to avoid having to hold you down.  But we, above all else, had to keep you alive.  And, when games and bribery didn't work, we had to hold your little body down even though it killed us.  I remember the day you stopped screaming.  The day you went back to school, less than a week after diagnosis, and read a book to your class about diabetes.  I remember the note you wrote me two days after you were diagnosed:" I'm really glad your my mommy.  When can we go ice skating again?  I bet I'll be really good."  You saved me.  You were ok long before I was.  And, your strength gave me strength.  What resilience children have.  You became my hero.

Watching your child hurt, and being powerless to protect them.  This is devastating.  As your mom, my job was to protect you.  And, I couldn't.  Like so many other moms I know I have looked back.  I know there is no point.  I know rationally it is not my fault.  But, that doesn't stop the thoughts...I know now I had undiagnosed celiac during my pregnancy with you...did this contribute?  I put you in daycare when you were six months old...was this where you caught a virus that could have caused it?  And, now...new theories that weren't around twelve years ago...I gave you gluten in your first year of life...this could have caused it.  I know these thoughts are futile.  Ridiculous.  Pointless.  They rarely enter my conscious now.  But, tucked away, they are still there.  And, I'm sorry.  I am so sorry that I could not protect you.

Five years.  Why did this anniversary bother me more than any other since the first?  I was so relieved to go to bed that night.  So glad the day was done.

Maybe it is because it has been five years and there is still no end in sight.  Five years ago, I was still naive enough to believe a cure was coming soon.  I still have hope it will come, but I now know that "five or ten years" is a joke in the diabetes community.  They've been promised a cure in "five to ten years" for decades.  Maybe it is because now that you have had diabetes five years, I feel this time bomb ticking louder....complications....more than anything else time allows complications.  You will have had diabetes ten years by the time you are seventeen.  I panic when I even think about that.  I know that luck has so much to do with developing complications.  I have seen people who have worked so hard still get them.  You will have had diabetes twenty years when you are only twenty-seven.  Twenty-seven.  I was newly married, hadn't even finished my medical training.  And, by that time you will have had it twenty long years.  And, perhaps the scarier part is that the days that I have any control over the one thing that could prevent or delay those complications is marching closer.  You will likely leave my house in six years.  Already, I am losing control over helping you to manage your blood sugars.  And, I should be.  As much as I wish it wasn't, this is yours.  And, to succeed at all you must own it.  Gone are the days when I could feed you your precisely measured meals and have the luxury of you wearing the dexcom 24/7.  These days are about compromise, and fighting the effects of hormones.  They are about you becoming the young adult that you will be.  And, you will be an amazing one.

Five years.  Five years of sleepless nights.  Guilt for feeling anger as yet another night is interrupted by beeping machines that intrude into much needed slumber.  Guilt for having days that I am just tired of it all.  And, what right do I have when you must live with it forever?  Five years of explaining to people who don't get it.  Five years of hearing upsetting comments that aren't meant to be.  Five years of refraining from screaming at yet another person who stares at your pump or dexcom, or asks "what is that thing on your arm?"  And, yet five years is just a drop in the bucket compared to the journey you must take.

I hate it.  I wish I could take it for you.  It is not fair.  You did nothing to deserve this.

But, you are going to be ok.  And, because of that I, too, am going to be ok.

For every single negative that diabetes has brought, there have been so many absolutely amazing positives.  It has changed you.  You are the person you are because of it.  Your strength astounds me.  Your empathy amazes me.  It has connected us to a community that we otherwise would never have met.  A community that envelops us and supports us.  A community filled with super-hero children with type 1, and their un-sung hero siblings.  A community of adults with Type 1 that show me that you will be ok.  Yes, you may struggle.  Yes, you may get complications.  But, you will have support.  And, that support will carry you.  You have friends in Texas, Wisconsin, California...and you support each other.  You would never have them if not for diabetes.  You have saved your dad.  He was alone and because of you he is not alone anymore.  He has found what he was always searching for.  And, because of that, I know he, too, will be ok.  Your journey has led us to work that we never would have done otherwise.  Important work.  Work that needs to be done.

And, better times are near.  The Bionic Pancreas will change your life.  Yes, you will still have to wear so many things attached to your perfect little body.  You will still have the pinholes and skin breakdown.  But, the emotionally exhausting part---the thinking about diabetes every single moment of every single day....it will go away.  An amazing man with an amazing team is developing an amazing little computer that will do this for you.  And, he too is my hero.

And other amazing concepts like encapsulation...they may be a reality.

So, five years.  Five years since diabetes came to live with you.  You've lived well.  You've traveled across the country, hiked mountains, rafted down rivers, rode across deserts on horses.  You've left behind the elementary years and are thriving in middle school.  You are exactly where you are supposed to be despite diabetes.  You have thrived.  Five years, and I couldn't possibly be more proud of you.

Thursday, September 4, 2014

Diabetes on the Back-Burner

I haven't blogged in awhile.  I mean a looonnngg while.  I've been crazy busy.  With Jessica getting older, I have grown hesitant to share too many details of her life.  But, mainly I haven't needed to.  And, that is HUGE.  I started this blog as a place to dump all of the emotions I felt with a newly diagnosed child.  There are still bad days.  There are still many sleepless nights followed by long days at work.  There are failed and painful sites, insulin that goes bad, numbers that won't go down (or up) despite us doing what should work.  There are added in tween additions such as eye rolls.  But, overall everything is ok.  It is ok.  We are ok.  This is our normal.  Diabetes, although still a part of every single day, has been more on the back-burner.

The biggest reason it is ok is our support.  We had another terrific conference at Children With Diabetes in July.  Jessica shared that is is the only week she can truly relax without worrying who sees her site, or who finds out she has diabetes.  She is normal there.  And, normal to a 12 year old is priceless.  But, as opposed to last year where that sense of support ended for her the day we left the conference, this year she is staying in touch with her friends via instagram, facetime, and texting.  It has made a crucial difference.  As a parent, it makes me tear with happiness to know she has this.

Sean has it too.  His entire face lights up when he tells me he has heard from one of his adult with Type 1 friends.  He is connected.  He is supported.  He is not alone.

And, that makes all of the site changes, highs, lows so much better.  Because, we are not alone.

But, I want every patient to feel this way.

I have the huge privilege of teaching medical students.  This week during one of the classes they were to think of ways a diagnosis of Type 1 might affect patients, and what they could do to make that better.  I went from group to group listening to their discussions.  "Well, can they get a pump?  If they get a pump then it will be easy."  "How old are they?  If they are an adult then it is probably easier."  "I would tell them they just need to take their insulin and check their blood sugars and they will be controlled."  I cringed.  And, then I reflected.  They are students.  Most are fortunate to have never experienced a chronic disease.  They have absolutely no idea what it is like to live with one.  How can they possibly imagine?  How can they truly offer support?  And, even as they become physicians, will they gain enough experience to understand?  I take pride in always having been an empathetic medical student and physician.  My heart would bleed for patients. But, until I walked this walk, did I truly understand?  Of course not.  And, do I understand what this experience is like for each unique individual living with Type 1?  I do not.

Those living with Type 1 need each other.  There is so much physicians offer, but there is so much they simply cannot offer.  I have seen firsthand, that the diabetes community can offer that which as a specialty medicine cannot.  We know the truth.  It is not easy with the pump.  It is not easier for adults.  It is not easy for anyone.  It cannot be "controlled"...only managed.

That does not mean as educators, we should not keep trying.  I showed the students blogposts during class.  I watched them as they read the excellent CandyHearts post "She Tried."

Did it make a difference?  I don't know.  I'd like to think it did.

They are amazing students.  They mean well.  They want to help.  They cannot be blamed for their lack of knowledge or experience.

We can do better as educators.  And, I see huge positive changes.  This year the first year students are serving as patient navigators.  They will be paired with a patient and attend all their appointments with them, and truly get to know them.  This can only help.

I wish for every patient what we have found.  An amazing healthcare provider for Jess, and a community for her and Sean that sustains them.  Because, it is this that lessens the burden, and allows at times for diabetes to live on the back-burner.

Saturday, May 17, 2014

Running With Diabetes

When I turned 40 a good friend introduced me to running.  In a former life I had been a soccer player, and I can't say I was particularly interested in running.  I thrived on competition and teamwork, and running seemed boring and pointless.  But, I trusted this friend and so I gave it a go. And, I was hooked.  I loved what running gave me.  A time to reflect...to challenge my body...to feel healthy and strong.  I am not the fasted runner, nor have I any major claim to fame.  I've done half of a half marathon with the friend that introduced me to running, and a handful of 5Ks.  My running has been derailed by work, my daughter's brain surgery, and my own lack of motivation.  Yet, I have always returned.

Recently, Jessica has joined me.  I love having her as a running partner.  I love having the chance to introduce her to something that I have grown to love.  I love that unlike team sports, she can easily run throughout all life stages.  It gives us a time to be alone, to talk, to be healthy together.

Some runs diabetes is only in the background.  The bag of skittles clutched in my hand is the only reminder that it is there.  As our distance has increased I now bring her Dexcom along with the bag of skittles.  Sometimes she has a hard time telling when she is low when her heart is already pounding from exercise.

I'm learning to be able to tell her blood sugars by her run.  The slightly slower pace when she is high.  The days her blood sugar is perfectly in goal and she zooms past me.  I'm learning what works and what doesn't work.

Today what I tried, didn't work.  She started at 146 with a flat arrow (steady blood sugar.)  I gave her skittles and chocolate milk and we headed out.  Half a mile in and she was 86 and an arrow down.  We slowed to a walk and I gave her more skittles.  We ran again and a mile later she was dragging.  The dex showed 68 and flat.  More skittles.  More running and the dex stayed in the 60's.  We both figured it was just lagging with the amount of skittles consumed.  I could see the disgust with diabetes on her face.  "Remember Sebastien Sasseville and Korey Hood," I told her.  "Is Sebastien still running?" she asked.  I told her he was in fact still running...I mean it takes awhile to run across Canada from coast to coast.  I reminded her that Korey had run the Boston Marathon with ridiculously high blood sugars and ketones.  "Diabetes can't stop you," I told her.  We made it back home...it was not a great run.  She was upset by the 2.86 miles.  We normally do at least 3.12 (the kid likes to say she ran a 5K.)  The Dex was beeping and alarming the whole way home.  We walked in the door and the fingerstick showed a blood sugar of 71.

I don't know what it is like to run with a blood sugar in the 60s.  I sometimes have off days where it just doesn't feel good.  Somehow, I doubt these off days compare to what it feels like to run in the 60's or 300's or more.

I told Jess I was proud of her.  She is strong and brave.  Tomorrow we'll try a temp basal an hour or two ahead.  I reassured her I always have more tricks we can try.  And, if we run out of ideas we have people to ask.

It's a new experience, this running with diabetes.  But, we're up for the challenge.

Thursday, May 8, 2014

Twenty-Five Years

This weekend marks twenty-five years that my husband has lived with Type 1 diabetes.  I have known him for nineteen of those years.  I have witnessed firsthand the daily struggles, the highs, the lows, the WORK that is involved in living with this disease.  I've seen the emotional burden.  I have watched him cry when his own daughter was diagnosed at the young age of seven.  I saw the misplaced guilt that consumed him; the absolute devastation that he knew what she would live with.

But, I have also witnessed his strength, perseverance...his spirit.  I have watched him graduate from medical and graduate school without one accommodation for his diabetes.  I have watched him work inhumane hours during residency...saving patients' lives all while his blood sugar was in the 200's or 300's at times.  I have seen him sit and sweat while he quickly treats a low in order to get back to work. I have seen the syringes, the thousands of strips, the pump and dexcom changes.  I have witnessed bravery and triumph.  I have watched him travel desolate places.  I have seen him become the most amazing father my children could ever have asked for.  I have watched him become a hero to my Type 1 daughter.  I have seen him LIVE with Type 1.

Lately, I have seen his hope.  For many years he was hopeless.  He had been promised a cure in "5-10 years" at diagnosis.  We've all been promised that.  And, it did not come.  A horrible feeling to realize that there is no end in site.  This disease is so consuming.  He continued to live and thrive, but I remember my frustration when my daughter was diagnosed and I looked so desperately for that cure.  I combed the research and would excitedly share possibilities with him.  He did not share my excitement.  He had already lived through the disappointed and acceptance that a cure was not here.

But, lately his hope is back.  He once again believes there may be a cure.  But, more importantly, he believes for the first time that there will be a radical change in his life.  I will never forget his excitement and absolute idolization of Ed Damiano and his bionic pancreas.  It has given him motivation, and the belief that one day soon things will be better, not just for him but for Jessica and so many others too.

He is working harder then I have ever seen before.  Eating healthy, exercising, losing weight.  He excitedly texted me earlier this week...his A1c was 6.8---under 7 for the first time in awhile.  I could hear the pride.  He was so excited.  I watched him open the envelope from his endo with his lab results.  "Here are the results of your recent tests.  The statin has worked very nicely.  Please stay on it."  SERIOUSLY????  That is it????  No mention of his A1c which had been over 7 and is now 6.8...no acknowledgment of any of the work that had gone into these numbers.  I was disgusted.  Furious.  He was not.  He spent years looking to his health care provider for support.  Recently he realized it would never be found there.  But, he has found it.  In the form of Children With Diabetes and the DOC.  He feels connected for the first time...he no longer feels alone.  I watch his happiness every time he talks to the adults with T1 that he has met.  They are his support.  They are what he was always looking for.

This weekend marks a twenty-five year journey.  The battle of one man against a ruthless disease.  It marks a victory.  He stands strong with no complications and living an incredibly full and happy life.  He symbolizes hope....what I hope for my T1D daughter, and all those living with T1D.  Some of it is luck...I have seen those who have worked so hard still develop complications; some of it is being born in the right time and place...so many still die without access to insulin even today; but a huge part of it is  work.  His work.  And, that is what we will celebrate this weekend.  Twenty-five years of hard work is worth a celebration.

Sunday, March 30, 2014

Going Tubeless and Other Rambling Musings

After over three years on the One Touch Ping, she decided to try a switch.  We love Animas---their customer service is out of this world.  They rescued us in Colorado when her pump sounded like R2D2 and then died.  That pump went with us everywhere.  It changed her life and mine.  I will forever fondly remember that green One Touch Ping.

But, then she grew up.  She decided that, for now, she doesn't want to display her diabetes.  This doesn't mean she will always feel this way.  And, it is certainly not how we have "raised her."  But, I respect her decision.  And, if I were starting middle school again I think I would probably make the same one.  It is so hard to be different during these tumultuous years.  And, she feels this way only at school.  At JDRF events, out in the public, on vacation...she displays her diabetes proudly.  But, within the walls of the school she feels safer not putting her diabetes on display.

And, thus the battle of the tubing began.  She tried every possible way to hide the pump.  Spibelts showed underneath shirts.  Pump bands did too.  Skinny jeans were popular.  It was a daily fashion battle.

I suggested the Omnipod.  I had originally gotten her a demo three years ago, thinking it would be the least intrusive pump.  She had left the demo on less than ten seconds before ripping it off and throwing it on the soccer field.  But, the new version is smaller, and she is bigger.

At first she was resistant, but long story short, she decided to give it a go for 1 month.  We had our ups and downs.  It's not perfect.  On vacation it let out a high pitched alarm that wouldn't stop in the middle of the packed swimming pool.  She was horrified.  I thought that would be the end of the Omnipod, but she kept wearing it.  Their customer service isn't Animas, and I wasn't impressed with their tech support.  We miss the remote.  And, HAVING to change it every three days (it alarms if you don't) is a bit of a pain.  But, from a medical perspective she seems to have better insulin delivery and way less kinked site problems.  And, she can wear whatever shirt she wants.  And, so she has decided to stay on it.  And, her dad decided to switch too.

We are so lucky.  At a recent JDRF event I sat by the grandmother of a child about Jess's age with Type 1---diagnosed about the same length of time.  Sean got out his Dexcom and I saw her glance.  She had never seen one.  I showed her all the features, told her how much it has helped us.  She called her daughter over (the mom of her T1D granddaughter.)  She, too, had never seen one.  They were amazed by the technology.  Jess and Sean have had it for 4 years.  It is not new technology.  I completely respect people who do not want the technology.  But, to have never been offered it, I find that unacceptable.

It is hard to believe I am now the mom to a T1D middle schooler.  It is so different than elementary school.  Gone is the support from the teachers in terms of reminding her to check before tests.  We have had so much frustration with her 504 that we have all just given up for now.  The school will "allow" her to check and delay tests if she is high, but Jess (at age 11) must do it all on her own.  Even with standardized tests, no one will prompt her to check and defer the test if she is not in goal.  It has been exasperating, but the school won't budge.  It is amazing that within the same district, in elementary school the teachers were so involved, and would allow her to write her blood sugar on the corner of the test so there was transparency.  In middle school they consider it a "medical issue" so the teachers cannot be involved at all.  Jess must decide to check and then pull out the nurse's pass if she is not in goal.  Of course she doesn't do this.  That would draw attention...the very thing she is trying so hard to avoid.  If we hadn't had such an absolutely phenomenal elementary school experience with nurturing teachers and incredible principal it wouldn't be so hard.  But the contrast has been very difficult.

I will forever remember the lecture I went to at CWD where they talked about children processing diabetes.  When adults are diagnosed with a chronic disease they process it and move on.  For children, every new developmental stage means re-processing and figuring out how it fits into their life.  What having diabetes meant to Jessica at age 7 is very different than what it means to her now at age 11.  I remain so proud of her.  She doesn't check or pre-bolus as often as I wish she did.  But her HgbA1c's have been excellent.  She wears her pump and her Dexcom.  I have changed my expectations...taking insulin and wearing the Dexcom to me are non-negotiable.  I don't care how she takes her insulin (she has decided to remain on a pump) and I won't nag her to check her blood sugar as long as she wears the Dexcom.  I think we are still in a good place.

At the recent gala, we heard the heart-wrenching story of a mom whose beautiful daughter was recently diagnosed.  I so remember the raw pain of those days.  We have come so far.  I hate that Jess has this.  But she is living well with it.  Life is so much better than back then.  She has handled this unchosen road with such grace and strength.  And, that is the biggest thing that has made it easier for me.  Like other T1D children she is a hero...they all are.