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.

The Gray Zone

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

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

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

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

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

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

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

But, I don't have a choice.

The Universe Does Not Care

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

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

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

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

The universe does not care.

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

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

But, it is still devastating.

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

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

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

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

The universe does not care.

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

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

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

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

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

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

So, we will do this.