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.

Identity

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.

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.

Changed

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.